The Right to Know and the Right Not to Know

The privacy concerns discussed in the 1990s in relation to the New

Genetics failed to anticipate the relevant issues for individuals, families,
geneticists and society. Consumers, for example, can now buy their
personal genetic information and share it online. The challenges facing
genetic privacy have evolved as new biotechnologies have developed,
and personal privacy is increasingly challenged by the irrepressible low
of electronic data between the personal and public spheres and by sur-
veillance for terrorism and security risks.

This book considers the right to know and the right not to know about
our own and others’ genomes. It discusses new privacy concerns and
developments in ethical thinking, with the greater emphasis on soli-
darity and equity. The multidisciplinary approach covers current topics
such as biobanks and forensic databases, DIY testing, group rights and
accountability, the food we eat and the role of the press and the new
digital media.

Ruth Chadwick is Professor of Bioethics at the University of

Manchester. She directed the ESRC Centre for Economic and Social
Aspects of Genomics (Cesagen) from 2002 to 2013.

Mairi Levitt is a senior lecturer in the Department of Politics,

Philosophy and Religion at Lancaster University, where she works in
empirical bioethics and researches ethical and social issues in genetics.

Darren Shickle is Professor of Public Health at the University of

Leeds, where his research interests include public health ethics, public
health genetics, ophthalmic public health, and HIV and sexual health.
 Cambridge Bioethics and Law

This series of books was founded by Cambridge University Press with Alexander
McCall Smith as its irst editor in 2003. It focuses on the law’s complex and trou-
bled relationship with medicine across both the developed and the developing
world. Since the early 1990s, we have seen in many countries increasing resort
to the courts by dissatisied patients and a growing use of the courts to attempt
to resolve intractable ethical dilemmas. At the same time, legislatures across the
world have struggled to address the questions posed by both the successes and
the failures of modern medicine, while international organisations such as the
WHO and UNESCO now regularly address issues of medical law.
It follows that we would expect ethical and policy questions to be integral to
the analysis of the legal issues discussed in this series. The series responds to
the high proile of medical law in universities, in legal and medical practice, as
well as in public and political affairs. We seek to relect the evidence that many
major health-related policy debates in the UK, Europe and the international
community involve a strong medical law dimension. With that in mind, we seek
to address how legal analysis might have a trans-jurisdictional and international
relevance. Organ retention, embryonic stem cell research, physician-assisted sui-
cide and the allocation of resources to fund health care are but a few examples
among many. The emphasis of this series is thus on matters of public concern
and/or practical signiicance. We look for books that could make a difference to
the development of medical law and enhance the role of medico-legal debate in
policy circles. That is not to say that we lack interest in the important theoret-
ical dimensions of the subject, but we aim to ensure that theoretical debate is
grounded in the realities of how the law does and should interact with medicine
and health care.

Series Editors

Professor Margaret Brazier, University of Manchester

Professor Graeme Laurie, University of Edinburgh
Professor Richard Ashcroft, Queen Mary, University of London
Professor Eric M. Meslin, Indiana University

Books in the series

Marcus Radetzki, Marian Radetzki, Niklas Juth Genes and Insurance: Ethical,
Legal and Economic Issues
Ruth Macklin Double Standards in Medical Research in Developing Countries
Donna Dickenson Property in the Body: Feminist Perspectives
Matti Häyry, Ruth Chadwick, Vilhjálmur Árnason, Gardar Árnason The Ethics
and Governance of Human Genetic Databases: European Perspectives
Ken Mason The Troubled Pregnancy: Legal Wrongs and Rights in Reproduction
Daniel Sperling Posthumous Interests: Legal and Ethical Perspectives
Keith Syrett Law, Legitimacy and the Rationing of Health Care
Alastair Maclean Autonomy, Informed Consent and the Law: A Relational Change
Heather Widdows, Caroline Mullen The Governance of Genetic Information:Who
Decides?
David Price Human Tissue in Transplantation and Research
Matti Häyry Rationality and the Genetic Challenge: Making People Better?
Mary Donnelly Healthcare Decision-Making and the Law: Autonomy, Capacity and
the Limits of Liberalism
Anne-Maree Farrell, David Price and Muireann Quigley Organ Shortage: Ethics,
Law and Pragmatism
Sara Fovargue Xenotransplantation and Risk: Regulating a Developing Biotechnology
John Coggon What Makes Health Public?: A Critical Evaluation of Moral, Legal,
and Political Claims in Public Health
Mark Taylor Genetic Data and the Law: A Critical Perspective on Privacy
Protection
Anne-Maree Farrell The Politics of Blood: Ethics, Innovation and the Regulation
of Risk
Stephen Smith End-of-Life Decisions in Medical Care: Principles and Policies for
Regulating the Dying Process
Michael Parker Ethical Problems and Genetics Practice
William W. Lowrance Privacy, Conidentiality, and Health Research
Kerry Lynn Macintosh Human Cloning: Four Fallacies and Their Legal
Consequence
Heather Widdows The Connected Self: The Ethics and Governance of the Genetic
Individual
Amel Alghrani, Rebecca Bennett and Suzanne Ost Bioethics, Medicine and the
Criminal Law Volume I: The Criminal Law and Bioethical Conlict: Walking the
Tightrope
Danielle Grifiths and Andrew Sanders Bioethics, Medicine and the Criminal Law
Volume II: Medicine, Crime and Society
Margaret Brazier and Suzanne Ost Bioethics, Medicine and the Criminal Law
Volume III: Medicine and Bioethics in the Theatre of the Criminal Process
Sigrid Sterckx, Kasper Raus and Freddy Mortier Continuous Sedation at the End
of Life: Ethical, Clinical and Legal Perspectives
A. M. Viens, John Coggon, Anthony S. Kessel Criminal Law, Philosophy and
Public Health Practice
Ruth Chadwick, Mairi Levitt and Darren Shickle The Right to Know and the
Right Not to Know: Genetic Privacy and Responsibility
The Right to Know and the
Right Not to Know
Genetic Privacy and Responsibility

Edited by

Ruth Chadwick, Mairi Levitt and Darren Shickle

University Printing House, Cambridge CB2 8BS, United Kingdom

Cambridge University Press is part of the University of Cambridge.

It furthers the University’s mission by disseminating knowledge in the pursuit of
education, learning and research at the highest international levels of excellence.

www.cambridge.org
Information on this title: www.cambridge.org/9781107076075
© Cambridge University Press 2014
This publication is in copyright. Subject to statutory exception
and to the provisions of relevant collective licensing agreements,
no reproduction of any part may take place without the written
permission of Cambridge University Press.
First edition published by Avebury 1997
Second edition Cambridge University Press 2014
Printed in the United Kingdom by Clays, St Ives plc
A catalogue record for this publication is available from the British Library
Library of Congress Cataloguing in Publication data
The right to know and the right not to know : genetic privacy and responsibility /
edited by Ruth Chadwick, Mairi Levitt and Darren Shickle. – Second edition.
pages cm – (Cambridge bioethics and law)
First published: Aldershot; Brookield, VT: Avebury, 1997.
Includes bibliographical references and index.
ISBN 978-1-107-07607-5 (hardback)
1. Human chromosome abnormalities–Diagnosis–Moral and
ethical aspects. 2. Genetic disorders–Diagnosis–Moral and ethical
aspects. 3. Privacy, Right of. I. Chadwick, Ruth F., editor. II. Levitt,
Mairi, editor. III. Shickle, Darren, editor.
RB155.6.R53 2014
174.2′96042–dc23
2014020711
ISBN 978-1-107-07607-5 Hardback
ISBN 978-1-107-42979-6 Paperback
Cambridge University Press has no responsibility for the persistence or
accuracy of URLs for external or third-party internet websites referred
to in this publication, and does not guarantee that any content on such
websites is, or will remain, accurate or appropriate.

.
 Contents

List of contributors page ix

Acknowledgements xiii

Introduction 1
R U T H CH ADWICK, M A IRI LEV ITT A ND DA R R E N SH IC K L E

Part I: Philosophical and legal issues 11

1 The right to know and the right not to know: the
emerging debate 13
R U T H CH ADWICK, M A IRI LEV ITT A ND DA R R E N SH IC K L E

2 Autonomy and a right not to know 24

J Ø R G E N H US TED

3 Privacy and the right not to know: a plea for

conceptual clarity 38
G R A E ME LAURIE

Part II: Issues in genetics 53

4 Biobanks and feedback 55
KA D R I SIM M

5 Suspects, victims and others: producing and

sharing forensic genetic knowledge 70
RO BI N W ILLIAM S A ND M ATTH IA S WIEN ROT H

6 Empowered by choice? 85
MA I R I L EV ITT

7 DIY genetics: the right to know your own genome 100

BA R BA R A PR A INS ACK

vii
viii Contents

8 Genomics, inconvenient truths and accountability 116

J E A N T INE LUNS H OF AND R U TH CHA DWIC K

Part III: Emerging issues 131

9 The right to know and the right not to know in the
era of neoliberal biopolitics and bioeconomy 133
H E N K TEN H AV E

10 The parental love argument against ‘designing’ babies: the

harm in knowing that one has been selected or enhanced 151
A N C A G H EAUS

11 The press and the public interest 165

J OAC H IM A LLG A IER

12 The inescapability of knowing and inability to not

know in the digital society 180
R I C H ARD WATERM EYER

13 The food we eat: the right to be informed and the

duty to inform 196
MI CH IEL KO RTH A LS

Index 209
 Contributors

JOACH I M A L L G AIER is a sociologist and media and communications

researcher. He is a senior scientist at the Institute of Science, Technology
and Society Studies at the Alpen-Adria-Universität Klagenfurt in Austria.
Previously he was an Honorary Fellow at the School of Journalism and
Mass Communication at the University of Wisconsin-Madison, USA,
and he was employed at the Research Center Jülich in Germany, the
University of Vienna in Austria, and the Open University in the UK,
where he was awarded a PhD in sociology. He studied sociology at LMU
Munich in Germany, and Science and Technology Studies at Maastricht
University in the Netherlands. His research interests are Science and
Technology Studies, Public Communication of Science, Technology and
Medicine, and (New) Media, Communication and Popular Culture.
R U T H C H A DW I C Kis Professor of Bioethics at the University of
Manchester and directed the ESRC Centre for Economic and Social
Aspects of Genomics (Cesagen) from 2002 to 2013. She co-edits
Bioethics and Life Sciences, Society and Policy and has served on the
Council of the Human Genome Organisation, the Panel of Eminent
Ethical Experts of the Food and Agriculture Organisation of the United
Nations (FAO), and the UK Advisory Committee on Novel Foods and
Processes (ACNFP). She is Academician of the Academy of Social
Sciences and Fellow of the Hastings Center, New York; of the Royal
Society of Arts; and of the Society of Biology. In 2005 she won the World
Technology Network Award for Ethics.
AN CA G H E AU S holds a De Velling Willis fellowship in the Department of
Philosophy at Shefield University. Her research is in moral and political
philosophy, with a special focus on the importance of caring relationships
for theories of distributive justice. Recent publications include ‘Care
drain: who should provide for the children left behind?’ in Critical Review
of International Social and Political Philosophy, ‘Is the family uniquely valu-

ix
x List of contributors

able?’ in Ethics and Social Welfare and ‘The right to parent one’s biological
baby’ in The Journal of Political Philosophy.
J Ø R G E N H U STED is Associate Professor of Philosophy at Aarhus
University, Demark, and a former member of The Danish Council
of Ethics. Among his recent publications are books on Kierkegaard,
Wittgenstein and J. S. Mills. In the area of applied ethics he has pub-
lished Ethics, Morality and Values (2006); Ethics and Values in Social Work
(2009) and Ethics and Values in Nursing (2013).
MI C H I E L KO RTH A LS (1949) studied Philosophy, Sociology and German
at the University of Amsterdam and the Karl Ruprecht University in
Heidelberg (FRG). He analysed the Frankfurt School (Marx, Adorno
and Horkheimer, Marcuse and Habermas) and issues of moral edu-
cation and societal development. As Professor of Applied Philosophy,
Wageningen University, he contributes to the philosophy of food and
agriculture, of both local and global signiicance. Main publications
include Pragmatist Ethics for a Technological Culture (with Keulartz et al.
2002); Before Dinner. Philosophy and Ethics of Food (2004); Pépé Grégoire,
A Philosophical Interpretation of his Sculptures (2006); Genomics, Obesity
and the Struggle over Responsibilities (2011).
G R A E ME L AU RIE is Professor of Medical Jurisprudence in the School of
Law, University of Edinburgh. His research interests relate to the regu-
lation and promotion of medicine, science and technology. Among his
publications relevant to this collection are Genetic Privacy: A Challenge
to Medico-Legal Norms (Cambridge University Press, 2002), and his
co-authorship of Law and Medical Ethics (with J. K. Mason), now in
its 9th edition (Oxford University Press, 2013). His policy work has
included Chairmanships of the UK Biobank Ethics and Governance
Council (2006–2010) and the Privacy Advisory Committee in Scotland
(2005–2013).
MA I R I L E VI T T is Senior Lecturer in the Department of Politics, Philosophy
and Religion at Lancaster University. She is a social scientist working in
empirical bioethics with a particular interest in researching ethical and
social issues in genetics through engagement with different publics, from
children to pensioners and from legal professionals to readers of a local
newspaper. Her current research is looking at the implications of behav-
ioural genetics for notions of responsibility, blame and fairness. Earlier
projects include a schools-based project on the ethics of ‘Making humans
better and making better humans’; ‘Barcoded children’(on the National
DNA Database); commercial genetic screening; and young people’s ideas
 List of contributors xi

of risk and safety in biotechnological applications in different European

countries.
JEAN T I N E L U N SHOF studied Philosophy and Health Law in Hamburg and
in Amsterdam. She obtained her PhD from VU University Amsterdam.
As a philosopher and bioethicist, her research focus is on the concep-
tual and normative aspects of systems and synthetic biology. Based with
Molecular Cell Physiology at VU University Amsterdam, she works as
a Marie Curie Fellow at Harvard Medical School, conducting research
on systems biology-based concepts of health and disease, and the devel-
opment of a systems approach for ethics. In 2006, she developed the
innovative model of ‘open consent’ that forms the normative backbone
of the Personal Genome Project.
B A R BA R A P R A I N SACK is a Professor at the Department of Social Science,
Health & Medicine, King’s College London. A political scientist by
background, Barbara has published widely on the societal, regulatory,
and ethical dimensions of genetic and genomic science and technology
in medicine and forensics. From 2011 to 2013, she chaired the ESF
‘Forward Look on Personalised Medicine for the European Citizen’
alongside Stephen Holgate and Aarno Palotie. Barbara is also a member
of the Austrian National Bioethics Commission, and of the British Royal
Society of Arts.
DA R R E N SH I CKL E is Professor of Public Health at the University of Leeds.
He has previously worked at the University of Shefield and University of
Wales College of Medicine. As part of a Harkness Fellowship in 1996/7 he
was based at the Bioethics Institute at the Johns Hopkins School of Public
Health and the Kennedy Institute of Ethics at Georgetown University,
USA. He has worked for the Department of Health and Human Services
in Washington DC and the Department of Health in London on a range
of ethics issues related to genetics, privacy and end-of-life. He is also a
research ethics expert for the European Commission and the European
Research Council Executive Agency. His research interests are public
health ethics, public health genetics, ophthalmic public health, and HIV/
sexual health.
K A D R I SI MMis an Associate Professor in Practical Philosophy at the
Institute of Philosophy and Semiotics, University of Tartu, in Estonia.
Having graduated from history, gender studies and philosophy, her main
research interests and publications relate to bioethics (especially biobank-
ing and ethical and social implications of genetics), political philosophy
(theories of justice) and feminist theory.
xii List of contributors

H E N K T E N H AV E is Director of the Center for Healthcare Ethics at

Duquesne University in Pittsburgh, USA. He studied medicine and phil-
osophy in the Netherlands and worked as professor in the Faculty of
Medicine of the Universities of Maastricht and Nijmegen. From 2003
until 2010 he joined UNESCO in Paris as Director of the Division
of Ethics of Science and Technology. His recent publications include
Contemporary Catholic Healthcare Ethics (with David Kelly and Gerard
Magill, Georgetown University Press, 2013) and Handbook of Global
Bioethics (with co-editor Bert Gordijn, Springer, 2013). He is Editor-in-
Chief of the journal Medicine, Health Care and Philosophy.
R I CH A R D WAT ER M EY ERis Research Fellow in Impact and Engagement
studies at the School of Social Sciences, Cardiff University, and Director
of PIER Logistics – an academic consultancy specialising in impact
evaluation and evidence review in Higher Education contexts. He is cur-
rently seconded to the Chief Scientiic Adviser for Wales as a Science
Policy Research Analyst, leading research responding to the policy pri-
orities of Science for Wales and Innovation Wales. Research is focused on
academics’ strategy in exploiting the economic and social impact of their
research, speciically in science domains; and STEM careers guidance by
secondary science teachers and the interface with ITT, teachers’ CPD
and science enrichment and engagement activity.
MAT T H I A S W IENROTH studies cross-epistemic identities and rela-
tionships of new and emergent technosciences. He is a post-doctoral
Research Fellow at the Faculty of Health & Life Sciences at Northumbria
University and in the FP7 European Forensic Genetics Network of
Excellence. Here, he explores prevalent narratives and practices around
emergent forensic genetics technologies and their uses. Previous work
includes analysis of the production of the ield of nanotechnology through
identity building and collaboration; the governance of scientiic conduct
and research outcomes; collaboration across knowledge boundaries; and
failure of technology. He is currently lead-editing a book on social con-
vergences in the new biotechnologies.
is Professor Emeritus in the School of Applied Social
RO BI N W I L L I A M S
Sciences at Durham University, Professor in the Faculty of Health &
Life Sciences at Northumbria University, and a Visiting Professor at the
Policy, Ethics and Life Sciences Research Centre, Newcastle University.
He has published widely on the police uses of forensic science, is the
Northumbria University lead investigator on the FP7 European Forensic
Genetics Network of Excellence, and also holds a Wellcome Trust grant
for a study of the use of ‘familial searching’ in support of criminal inves-
tigations in the UK and USA.
 Acknowledgements

The editors would like to thank all the contributors and the contacts at
Cambridge University Press for their assistance with this volume.

xiii
 Introduction

Ruth Chadwick, Mairi Levitt and Darren Shickle

The irst edition of The Right to Know and the Right Not to Know was
published in 1997 as an output of the Euroscreen projects (1994–6;
1996–9), funded by the European Commission. The idea for the book
emerged over dinner at a conference in Turku, where Ruth Chadwick
had given a talk on the topic of the right to know and the right not
to know, and discussion in the management team of Euroscreen con-
cluded that there were so many interesting associated issues that a vol-
ume could and should be prepared. As the publication was an output
of a project on genetic screening , it did not seem necessary to specify
in the title that the issues were to be understood in the genetic con-
text. At the time, it was a hot topic in genetics: in the 1990s there had
been much discussion about disclosure (or not) in the clinic. At the
beginning of the decade, for example, the Royal College of Physicians
published its Ethical Issues in Clinical Genetics (1991), which identiied
a number of possible scenarios, and in the same year the results of the
empirical survey of disclosure dilemmas, conducted by Dorothy Wertz
and John Fletcher, was published in the journal Bioethics (Wertz and
Fletcher 1991).
There had been developments, however, in the 1980s, which paved the
way for discussions related to wider population screening (Shickle and
Harvey 1993). The Nufield Council on Bioethics published its report
on genetic screening in 1993. Of the two Euroscreen projects that were
funded by the European Commission, the irst (1994–6) examined eth-
ical issues in predictive medicine. The second was concerned with insur-
ance, commercial testing and public awareness. Clearly, issues of rights to
know and not to know were implicated in all of these, in different ways.
In the clinic the principal issues discussed concerned potential ten-
sions between the interests of family members, and the right (not) to
know about late onset disorders. A commonly discussed scenario was
where one member of a family wished to undergo genetic testing but
another (their parent, for example) did not, the implication being that
disclosure for the one would also give an indication of the genetic status
1
2 Ruth Chadwick, Mairi Levitt and Darren Shickle

of the parent. Findings of non-paternity in genetic testing in the clinic

also gave rise to potentially dificult situations.
In relation to late onset disorders, some people would prefer to know
about their risk of developing diseases such as cancer or dementia, even
though the onset might be decades into the future, so that they could
structure their lives accordingly (even though the predictions would be
fraught with more or less uncertainty, depending on the condition in
question). For some individuals with a strong family history of genetic
disease, the uncertainty of not knowing was dificult to bear, and hence a
genetic test that helped to provide more clarity helped to alleviate these
anxieties, even if the recalculated risk was higher. The contrary position,
held by other individuals, was a preference not to know, and to live in
the hope of a long and healthy life. There were also particularly challen-
ging issues about genetic testing of children (Clarke 1994). These issues
remain.
The wider issues addressed in projects such as Euroscreen 2 included
the rights of third parties such as insurers and employers to what they
perceived as information relevant to insurability or employability; the
rights of individuals to access genetic information in the marketplace
rather than in the clinical context (and without the professional safe-
guards associated with a clinic); and the right of society (including but
not conined to patient groups) both to be informed about the direction
of science and to have a voice.
In this book we aim to update the debate by further critiquing philo-
sophical principles of privacy and autonomy, reviewing changes in the
genetic privacy debate since the 1990s and discussing new arenas of the
privacy concern.

Part I: Philosophical and legal issues

Part 1 sets the scene with an overview of the philosophical and legal
debate around the right to know and the right not to know. In the irst
chapter the editors explore developments since the irst edition of the
book in 1997. There have been changes in context with the completion
of the Human Genome Project, the establishment of large-scale popu-
lation biobanks and social and political change, with an increase in sur-
veillance and an explosion in social media, emerging issues and trends
in ethical approaches. Genomic research has opened up the potential of
personalised health advice, in the context of medication (pharmacogen-
omics) and nutrition (nutrigenomics). Whole genome sequencing has
meant that rather than disclosing just single incidental indings there is
now the prospect of knowing everything in the genome. Thinking about
 Introduction 3

the ownership of genetic information has expanded from the implica-

tions of the right to know and right not to know for the individual’s sense
of identity to include the implications for collective identity. In ethical
approaches there is now a greater emphasis on solidarity and equity and
a trend towards rethinking the concept of privacy, over and above devel-
opments in data protection.
Next, in the only chapter reprinted from the last edition, Jørgen Husted
focuses on the speciic issue of unsolicited disclosure of genetic informa-
tion to hitherto unsuspecting relatives, who thereby irreversibly lose their
‘genetic innocence’ and thus their right not to know. In thinking about
the moral acceptability of this – about whether it can be justiied in terms
of a right to know – he distinguishes between two senses of autonomy:
a thin and a thick conception. From the point of view of the thin con-
ception the disclosure appears to enhance autonomy by providing infor-
mation to facilitate decision making. This analysis is lawed, however, if
a thick conception allowing for autonomy as self-deinition is acknowl-
edged, because it takes away from the individual the very decision of
whether to know or not to know. There are dangers here of moralism as
well as paternalism.
Graeme Laurie’s analysis of privacy and the right not to know is in
contrast to that of Husted. He argues that while the right to know is
typically underpinned by an autonomy argument, the right not to know
cannot be so underpinned, except in situations where an individual has
expressed a prior wish not to know. For Laurie the dificult cases of dis-
closure concern those instances where there is no prior expression of
preference, and to disclose the option of knowing/not knowing will in
itself make clear that there is something to know. Here the interests at
stake are best construed as privacy interests. Privacy here is explained as
a genuine state of separateness from others, which also includes psycho-
logical separateness from others. The chapter proceeds to examine what
legal protection of such interests is possible and concludes that the role
of the law here should be approached with caution: ‘Professional discre-
tion, rather than legally imposed duty, is likely to be the optimal way to
navigate this particular maze’.

Part II: Issues in genetics

The second part contains ive chapters on contemporary issues in gen-
etics. Kadri Simm reviews the ethical debates when large population
biobanks were being established and the lack of discussion at that time
of the possibility of incidental indings, that is, the discovery of DNA
information that might be relevant to a donor but was not the aim
4 Ruth Chadwick, Mairi Levitt and Darren Shickle

of the research. Simm discusses why ‘incidentalome’ has now become

a hot topic in biobanking. As genetic research is more commonplace
and biobanks share information across global networks the challenge
of feedback looms large and researchers and institutions consider what
is the right thing to do and who should do it. Whereas most biobanks
had no mechanisms for the feedback of personal information to donors
when they were set up, sociological research has indicated that donors
would like such feedback. Simm considers the arguments for and
against the disclosure of relevant research results to donors and the
proposals for guidelines in this area. The focus is now on the ‘how and
when’ of feedback, rather than ‘if and whether’ it should be given. In
a future where whole genome sequencing becomes cheaper and part
of routine medical care, it cannot be assumed that individuals will act
on the information that is disclosed and that their quality of life will
improve.
Robin Williams and Matthias Wienroth focus on forensic databases
and who has the right to commission, deploy and share this informa-
tion. Having considered the complex and divergent legislation that limits
the uses of forensic DNA proiles in different jurisdictions, the authors
look at recent controversial developments that promise the ability to
infer relatedness through familial searching, population group origins
and physical attributes of the person whose sample has been analysed. It
might be presumed that legally sanctioned criminal investigations have
a right to know but whether such intrusive interventions may be consid-
ered legitimate depends on who is to have access to the knowledge and
their overall value orientation, the purposes for which it will be used and
the categories of people to be subject to these interventions. The authors
conclude with a discussion of the claims of the individual either to be
known or to be forgotten.
Mairi Levitt argues that in order to exercise a right to know or a right
not to know, it is necessary to have the right information to facilitate
this choice. The problem is that in many areas of everyday life, choices
have proliferated: some choices may be trivial, others have more import-
ance. At the more signiicant end of the spectrum, patients and parents
are bombarded with information about health and child rearing. The
assumption is frequently made that an individual will be empowered
by choice and in turn that empowerment is a means to improving the
quality of individuals’ lives. Choice has also been portrayed by govern-
ments as the key mechanism in driving quality and value for money
in public services. However, as Levitt points out, individuals who are
economically deprived may also be relatively choice deprived. Levitt
describes the effects on the chooser, both positive and negative, of an
 Introduction 5

ever-increasing range of choices. In particular, there are psychological

consequences for making decisions under uncertainty and where there
are implications for health and well-being of self and family. In recog-
nition of this, many societies evolve socially acceptable ways of doing
things that remove the need for individuals to decide how to act in
every situation. Levitt concludes by discussing the implications of an
increasing range of options arising from genetic technologies and how
third parties may seek to inluence these choices through more or less
subtle messages about what the good parent or the responsible person
should do.
One expanded area of choice is the emergence of commercial com-
panies offering knowledge of one’s own genome. Barbara Prainsack dis-
cusses seven instances of knowing, sharing and storing data on one’s own
genome; from genetic analysis within a clinical context to making one’s
own genomic data public. Although the right to know one’s own genetic
constitution might be seen as relatively unproblematic, there are new
issues to consider, including the portability of genetic data and the avail-
ability of raw data that individuals might analyse, make sense of using
online tools, share with others or make accessible for research. Prainsack
discusses the risks inherent in these practices and comes to the conclu-
sion that there are no compelling reasons to deny a person the right to
know his or her own genome. Individuals should be able to enforce a
right not to know in relation to institutions, but they should not be able
to enforce this right vis-à-vis other individuals who may disclose infor-
mation that, at least partially, applies also to them.
The last chapter in this part sets out to investigate the intricate relation-
ship between science, ethics and accountability against the background of
developments in the genomic sciences. To whom are scientists account-
able with respect to the content and outcomes of their work? Highly
‘inconvenient truths’ may result from meticulous empirical observation
and rigorous theoretical analysis. What to do if carefully derived, robust
research indings clash with the deep convictions and key components
of people’s traditional knowledge – in particular if it concerns vulner-
able populations? Can people be expected to consent to the confronta-
tion with ‘enlightenment’? Respect for persons and populations requires
respect for choosing to adhere to tradition and narrative. The case study
of the Havasupai is used to explore the ways in which scientiic indings
about communities can clash with fundamental beliefs they have about
themselves. Scientists should adhere to the values of science that, accord-
ing to Ismail Serageldin, presuppose ‘freedom to enquire, to challenge, to
think, and to envision the unimagined’ and they may thereby reveal some
inconvenient truths.
6 Ruth Chadwick, Mairi Levitt and Darren Shickle

Part III: Emerging issues

In the third and inal part Henk ten Have sets the scene for the discussion
of emerging issues by a consideration of the rise of the genetic framework
for human existence, used not only for viewing health and disease but
also for human behaviours and interactions. He shows that this geneti-
cisation is one part of a dominant ideology which has often remained
unanalysed in bioethics but is becoming subject to criticism in some
areas of science. Within this dominant ideology of neo-liberalism, global-
isation is focused on empowering autonomous individuals, who should
be free to choose what they want, rather than on the interconnectedness
of humans with each other and the environment. As bioethics becomes
global bioethics, ten Have discusses the consequences of this change,
drawing on Foucault’s concept of biopolitics that subjects autonomous
individuals to new and pervasive forms of discipline, monitoring and
surveillance, self-regulation, nudging and incentives. In this context of
individual responsibility the protective role of the state is deliberately
decreased, and economic and social determinants of health become
irrelevant. In the second part of the chapter, ten Have inds areas where
neo-liberalism is under critique as the public domain is being redeined
and expanded. He discusses changes in the patenting system, increases
in data sharing and open access publishing as evidence of the emergence
of a new ethos of science. However, as a more open science maximises
the right to know, it is important to relect on the implications for the
protection of privacy and whether privacy is viewed from an individual
or social perspective. In conclusion, ten Have discusses the critical role
of bioethics today.
The next four chapters focus on four emerging issues. First, Anca
Gheaus discusses ‘designer babies’ and the possibility of harm in know-
ing that one has been selected or enhanced. Parents may speculate what
their unborn children will be like when they grow up – what will they
look like? will they be clever? what occupation will they have? – but Anca
Gheaus explores the consequences for the parent–child relationship if
children were selected for particular traits or genetically enhanced. She
argues that they might feel as though the love that they receive from their
parents is conditional on them growing up to manifest the selected traits.
Gheaus’s argument is underpinned by an understanding of adequate
parental love which includes several characteristics: parents should not
make children feel they are loved conditionally for features such as intel-
ligence, looks or temperament; they should not burden children with
parental expectations concerning particular achievements; and paren-
tal love is often expressed in spontaneous enjoyment and discovery of
 Introduction 7

children’s features. Gheaus concludes by arguing that this understanding

of parental love provides a reason to question the legitimacy of parental
use of selection and enhancement and to explain why parents should not
engage on a quest for the ‘best child’.
The next two chapters consider the role of traditional and digital
media in the right to know and the right not to know debate. First
Joachim Allgaier considers what have been the main sources of infor-
mation about medical and scientiic development: television and the
press. These have framed the public debate about the ethical and legal
issues associated with such technologies. However, the inter-relationship
and inter-dependence of scientists, journalists and public are complex,
requiring deeper investigation. Allgaier notes that genetic manipulation
and biotechnology became a topic of mass interest in the mid-1990s,
most notably in the context of genetically modiied food and cloning.
This time was also marked by a divergence in the debate around biotech-
nology, with a separation between agri-food (green) and biomedical (red)
biotechnology. This distinction has consequences for how the different
technologies were portrayed in the mass media, and consequently how
they were perceived by the public. Allgaier analyses the media coverage
of these different manifestations of biotechnology and genetics over the
last twenty years and presents data on how public opinion and attitudes
towards genetic biotechnology have also evolved.
Richard Watermeyer argues that in the age of the Internet, informa-
tion is both ubiquitous and instant – instantly populated, repopulated
and retrieved. Science dialogue has been opened up to social actors with
disparate socio-political orientations. The public are able to interact dir-
ectly with scientists, bypassing the mediation of science journalists. The
luidity of online interactions provides for a more integrated, informed
and eficient republic of choice makers compared to traditional forms of
public consultation. This represents a unique opportunity for the online
citizen to emerge as a scientiic citizen or citizen scientist, beyond the
control of dialogue sponsors and regulators who may wish to inhibit,
contain or direct public debate. However, Watermeyer recognises that
online public dialogue in science is not without risk or drawback. User-
generated scientiic information is particularly susceptible to inconsist-
ency or factual error caused by unscientiic, subjective interpretations,
but also to manipulation by online authors seeking to align scientiic
‘truths’ or re-imagine ‘facts’ in line with their particular agenda or inter-
ests. The dialogue, or as Watermeyer calls it, the ‘polylogue’, may be
inchoate and fragmentary and the multitude of perspectives may still
coalesce around the same concerns as arise from face-to-face dialogue.
Indeed, the sheer abundance and heterogeneity of digital publics may
8 Ruth Chadwick, Mairi Levitt and Darren Shickle

actually inhibit public debate and decision making. The onus is on par-
ticipants to make fair and credible assessments, particularly where pub-
lic knowledge of new science is limited. The question remains of how
to mobilise ‘uninvited’ dialogue in ways that might bear pressure on
organisational and governing powers. The public are becoming increas-
ingly adept at navigating their way online and, for the current younger
generation, to ‘exist ofline’ is for the majority fantastical and absurd.
However, less technologically savvy older generations might be excluded
from such polylogues. For Watermeyer, the important questions are not
about our right to know or not to know in the digital age, but how we
make sense of what we know, what we need to know and what we do not
need to know.
In the inal chapter Michiel Korthals discusses the food we eat.
Everyone needs to eat, but in modern societies there is a gap between
food production and food consumption, resulting in people becoming
both alienated from food and subordinated to corporate production of
food. Consumers lose their trust in the food sector. In the food sector,
the right to know and to be informed about the aspects of food one is
interested in has prominence over the right not to know. Those who do
not wish to know about their foodstuffs can simply ignore the informa-
tion. Korthals discusses consumer rights and the ethical considerations
that underpin them, and the pros and cons of labelling. The right to
know has its mirror in the duty to inform, and here companies, gov-
ernments and civil societies play a role. However, the food sector is an
incredibly complex bowl of spaghetti, full of black holes, sometimes due
to the strategies of producers to make information inaccessible and to
defend their interests. It is a ‘bizarre bazaar’. Perhaps the gap between
consumers and food production can be bridged by labelling and certi-
ication schemes, but these are in many cases not suficient to structure
the food sector into a fair sector that acts responsively to consumers’
and citizens’ interests. Market-driven and third-party certiiers (label-
ling organisations) are often not living up to their promises. The right to
be informed can also be given shape by consumers and their organisa-
tions in developing knowledge and information schemes (as a kind of
crowd communication system) by using modern mass media such as
apps. Moreover, in participating in agricultural processes, for example in
Community Supported Agriculture, consumers can organise their own
knowledge about what they think is ethically legitimate to eat.

References
Chadwick, Ruth, Levitt, Mairi and Shickle, Darren (eds.) 1997. The Right to
Know and the Right Not to Know. Aldershot: Avebury.
 Introduction 9

Clarke, Angus 1994. ‘The genetic testing of children. Report of a Working Party
of the Clinical Genetics Society (UK)’, Journal of Medical Genetics 31(10):
785–97.
Nufield Council on Bioethics 1993. Genetic Screening: Ethical issues. Nufield
Council on Bioethics: London.
Royal College of Physicians 1991. Ethical Issues in Clinical Genetics. London:
Royal College of Physicians.
Shickle, Darren and Harvey, Ian 1993. ‘“Inside-out”, back-to-front: a model
for clinical population genetic screening’, Journal of Medical Genetics 30:
580–2.
Wertz, Dorothy and Fletcher, John 1991. ‘Privacy and disclosure in medical gen-
etics examined in an ethics of care’, Bioethics 5(3): 212–32.
Part I

Philosophical and legal issues

1 The right to know and the right not to know:
the emerging debate

Ruth Chadwick, Mairi Levitt and Darren Shickle

In this chapter we aim to outline some of the ways in which the debate
over the right to know and the right not to know has moved on since
this book was irst published in 1997. The issues in genetics and genom-
ics have moved even further out of the clinic, notably in the context of
population-wide genomics research and commercial testing.
At the time of the irst edition of this volume, ‘the right to know/not to
know’ was a prominent framing of issues in genetics. Today, this framing
is less overt, though still relevant. Other rights are increasingly discussed,
such as the right to be forgotten, discussed here in Chapter 5. But beyond
framings using rights language, debates in genetics, genomics and other
areas are frequently discussed in relation to privacy and data protection,
concepts closely related to the right (not) to know.
Privacy is a wider concept than data protection and includes spatial
and decisional privacy as well as privacy in relation to personal infor-
mation, the aspect of privacy most clearly implicated in genetics. In the
1990s the EU Directive on Data Protection came into force, recognising
that data needs to low across the European Union (and beyond), but
that safeguards are necessary. Since the Directive, privacy and data pro-
tection have come increasingly under challenge, and the challenges are of
different types. There are, irst, intentional encroachments upon privacy in
a society concerned with surveillance and security, by governments and
corporations. These are justiied by a ‘trade-off ’ argument: some privacy
is surrendered in exchange for beneits. The second type of challenge
occurs as a seemingly unavoidable side effect of new technologies: mobile
phones reveal our location; and it is claimed, for example, that privacy
can no longer be guaranteed in the light of technological developments
(see, e.g., Lunshof et al. 2008). Thirdly there is cultural change in the form
of what may be called the ‘new exhibitionism’, which we have seen in the
explosion of social media.
In the light of such developments, at the time of writing there is under
way discussion of the revision to the existing EU data protection rules
(European Commission 2012).
13
14 Ruth Chadwick, Mairi Levitt and Darren Shickle

Privacy in genomics has always been at the centre of the debate, but
it is interesting to relect why so many concerns have arisen here, while
in other contexts it appears there has been more acceptance of possible
threats to individual privacy in exchange for purported beneits – both
convenience, in the case of mobile phones, and greater security, as in the
case of surveillance and airport procedures. It is tempting to think that
genomics has unjustiiably had a bad press, but this may be due to his-
torical legacies related to public (dis)trust of science. On the other hand,
maybe the appropriate norms of information low do differ according to
context, as Helen Nissenbaum has argued (Nissenbaum 2009); maybe
there is variation between different publics, such as generational differ-
ences in how much information we are willing to reveal about ourselves
and in what arena. Facebook, for example, appears to be challenging old
conceptions of ‘friendship’, but how people relate to their genetic infor-
mation still gives rise to controversy.
It may be the case that there is a need to think differently about privacy
in today’s world and this is not necessarily a matter of surprise or regret.
Values change and thinking about ethics develops, just as scientiic para-
digms shift. What is needed is a real sense of what interests (of different
kinds) are at stake, and how the appropriate balances can be struck. In
examining developments relevant to these issues since 1997 we will con-
sider changes in context, emerging issues and inally trends in ethical
approaches.

Changes in context
The irst contextual change since 1997 that must be mentioned is
the completion of the mapping and sequencing of the human gen-
ome, which paved the way for developments such as whole genome
sequencing. This is important for the right to know and the right not
to know in at least two ways. First, attention has turned to the signii-
cance of the information that has been produced, and has also returned
to issues of genetic determinism. The discovery that humans have far
fewer genes than had previously been supposed led initially to the sug-
gestion that genetic determinism had been proved false, in so far as the
genes themselves could not explain the complexity of human beings.
Since then, however, determinism has arguably reappeared in a new
guise. In the immediate aftermath of the Human Genome Project, it
was claimed that genetic determinism was dead. This was due to the
discovery that there were far fewer genes in the human genome than
had been expected, around 23,000 rather than 100,000. Surely, such
a small number of genes could not account for the complexity of the
 The right to know and the right not to know 15

beings that we are. If there is determinism, it must lie elsewhere than

in the genes per se.
Of course, there had been critical discussions of genetic determinism
that predated this discovery. There had been debate about the difference
between the ways in which a gene can inluence rather than determine.
Even in the case of a single gene disorder, there is variation in penetrance
and severity. It is also important to remember that these discussions of
determinism relate to the nuclear genome: disorders in the mitochon-
drial genome, inherited down the female line, produce very variable
results. Much more is now understood about such things as copy num-
ber variation and epigenetics (Chadwick and O’Connor 2013). With the
advent of whole genome sequencing, however, genetic determinism is
heavily implicated in an imagined future in which it is possible to predict
people’s future talents and behavioural traits and to use these predictions
to inform not only biomedical but also training and educational needs.
Is this re-emerging genetic determinism determinism in the same sense
as the genetic determinism that was rejected at the turn of the century?
We think not. What was being rejected in that debate was primarily based
on the outdated ‘gene for x’ model. The genetic determinism that is emer-
ging now is the idea that the genome in all its complexity is deterministic,
taking into account the volume of data that can be made available on
the precise sequence in an individual’s genome, including all the myriad
ways in which he or she differs from other individuals.
So we need to be clear about the form that genetic determinism is now
taking, in addition to the ethical implications of its employment. It is still
counteracted by other considerations, including arguments about gene–
environment interaction. Such interaction, however, has to take into
account not only the environment external to the body, which can be
both physical and social, but also the environment internal to the body.
A contextual factor which has arguably affected the debate since 1997
as much as any other has been the development of large-scale population
genetic research involving the establishment of biobanks. Alongside the
much-discussed national initiatives in Iceland, Estonia and the United
Kingdom, there has been increasing recognition of the scale of biobank-
ing of different kinds, including disease-speciic collections, regional col-
lections and international initiatives.
Biobanking has brought with it new challenges to data protection and
privacy, particularly in an era of data sharing and cross-border low of
samples and data. In this situation there are two broad types of response,
not mutually exclusive. The irst is to seek enhanced forms of data protec-
tion, at both a technological and regulatory level. The other is to re-exam-
ine what our thinking about privacy is and should be. If re-identiication
16 Ruth Chadwick, Mairi Levitt and Darren Shickle

is always possible, at least in principle (Lunshof et al. 2008; Gymrek et al.

2013), it is misleading to ask people to consent to donate samples in
exchange for a promise of privacy: privacy is no more.
A less strong view is that privacy as we knew it is no more. Mireille
Hildebrandt has argued, for example, that privacy regarded as sover-
eignty over one’s data is not tenable, and this is particularly the case
when the issues concern how conclusions may be drawn about an indi-
vidual through data mining and proiling (Hildebrandt 2008). Group
privacy has become a real issue alongside individual privacy, as is shown
in Chapter 8 in this volume. These developments have at the very least
added a new dimension to the right to know and the right not to know
discussion. The ongoing tension between the interests of the individual
and the collective has been played out afresh in relation to biobanks, with
the motivations for participation, for example.
Beyond the genome, there have been important social and political
developments affecting the issues. In the post 9/11 world, concerns
about security have had a signiicant impact upon debates about priv-
acy. The extent to which there can and should be a trade-off between
privacy and other values such as security is a live issue not only in gen-
omics but also in relation to such developments as biometric identiica-
tion technologies. Developments in relation to both WikiLeaks and the
Edward Snowden affair have also given rise to increased concerns about
personal data.
Further, the extent to which debates about science have become
public debates has increased over the last ten years, with the increas-
ing recognition that public engagement should move upstream. This
phenomenon is related to the right to know/not to know debate in so
far as the public or different publics might claim a right to know what
options are on the table at a much earlier stage than the downstream
offer of a test. Rather, it might be argued that their awareness of, and
input to, the discussion of the relevant issues should take place at the
stage when decisions are being taken about research that will ultimately
lead to the offer of particular tests. The so-called ‘democratisation of
science’ issues become increasingly complicated in the light of com-
mercial offers of testing direct to consumers that may reveal sensitive
health-related information, bypassing the traditional safeguards of the
biomedical context.
Perhaps most strikingly, the explosion in social media, the implica-
tions of which are discussed in Chapter 12, has brought with it extensive
revelation of personal information in exchange for perceived beneits of
social inclusion and various services, which contrasts starkly with the
fears in the genomics context of disclosure leading to potential exclusion
 The right to know and the right not to know 17

and loss of services such as insurance. Perhaps this difference can be

traced at least in part to the fact that in biomedicine privacy comes with
a lot of ‘baggage’ related to disclosure issues, which may need to be cast
overboard in some contemporary situations.

Emerging issues
Despite all these changes in context, it would be inaccurate to say that
there has been a wholesale change in the issues now being confronted
regarding the right to know and the right not to know: some of the dilem-
mas remain in place, particularly in the context of the clinic, as indi-
cated above. It is important to recognise, however, the areas in which
new issues have emerged.

Biobanks and the right to know

In relation to population genomic research involving biobanks, one of the
most prominent emerging issues has been the extent to which individ-
uals have the right to feedback regarding results from research on their
samples. There are at least two distinct questions: the actual policies of
biobank initiatives, on the one hand, and the principles involved, on the
other. Biobanks in different social contexts have taken different stances
on this, so the discussion here will be limited to the kinds of argument
appealed to. Considerations in favour of the view that individuals either
do not or should not be regarded as having such a right include, irst,
that the information is likely to be of little value to the individual. Raw
research data may not provide information of any real beneit: it may be
unclear what the signiicance is. From an ethical point of view, an argu-
ment against a right also follows from the informed consent involved – if
individuals have agreed to participate knowing that there is to be no feed-
back, then they do not have a right to it – there is no legitimate expect-
ation of a contractual or quasi-contractual sort. Based on considerations
of this sort, there is a view that information provided about research
on samples provided to biobanks should be limited to general research
results, and not to speciic information.
On the other hand, whatever the facts of the informed consent, there
is a moral argument for a residual obligation to offer feedback of the fol-
lowing sort. If A has information which could be potentially life-saving
to, or even signiicantly relevant to the future health of, person B, then
A has a moral obligation to offer that information. While this could be
argued against by appealing, for example, to a purported moral diffe-
rence between harming B and not going out of one’s way to help B, the
18 Ruth Chadwick, Mairi Levitt and Darren Shickle

context in which the information is sought and possessed arguably affects

the issues. Where individuals have volunteered to participate for the pub-
lic good and information is discovered that is material to their welfare,
to withhold it could be construed not only as an omission but also as a
harm. If they are displaying solidarity to their community, are there not
moral considerations of solidarity for supporting them in return? There
is a view, however, that participants should themselves take the initia-
tive in accessing data through online platforms, for example (Nufield
Council on Bioethics 2011: xviii). In this volume, Kadri Simm takes the
debate further, to look at the ‘how and when’ rather than just the ‘if and
whether’.
This discussion is linked to issues concerning how information gath-
ered by biobanking initiatives is held and stored, including the speciics
of anonymisation and coding. Much has been written about the very con-
fusing terminology surrounding these questions (Knoppers and Saginur
2005). Simply, the main issues relevant to the right to know and the right
not to know debate turn on the extent to which it is possible to link data
to identiiable individuals. If it is not possible, then the previous issue
concerning feedback would not even arise, for it would not be possible to
trace the particular individual involved.
If samples are completely anonymised, and it is not possible to link the
data to be gleaned from them to individuals, then their value in research
terms is considerably reduced. But as has already been pointed out,
where DNA is concerned there is no such thing as a complete loss of
identiiability. DNA is, after all, despite ongoing debates about its useful-
ness in the forensic context (including the UK National DNA Database
as discussed in Chapter 5), one of the primary identiiers, if not the pri-
mary one. Where there is less than complete anonymisation, however,
another issue arises, beyond that of the individual’s right or otherwise
to feedback on their data, and this is the question of who else has the
right to access the data. The questions of commercial companies’ and
other third parties’ access to data take on a new twist in relation to the
value of collections in so far as they may be regarded as resources for the
common good.
What of the right not to know in relation to population research?
This might appear to be a non-issue – arguably the burden of proof is
upon those who would seek to know, or seek to disclose, rather than the
other way round. However, this is not clear cut. When population gen-
etic research produces results which characterise groups in particular
ways, individuals, identifying themselves with a group in question, may
be made aware of factors they would have preferred not to know about.
Science may reveal ‘inconvenient truths’ (see Chapter 8).
 The right to know and the right not to know 19

Identity
These considerations raise the very large issue of the role of identity in
the right to know and right not to know debates. It was suggested in the
1997 volume that there may be a right not to know genetic information
on the grounds that it may constitute a threat to the individual’s sense
of identity (see, e.g., Husted, reprinted here, Chapter 2). Developments
since 1997 have arguably added new ways in which, and increased the
extent to which, this is the case.
Collective identity, for example, may be affected in a variety of ways.
A prominent example has been the arguments put forward by disability
rights organisations in opposition to the characterisation of particular con-
ditions as disorders, combined with the seeking of measures to ‘cure’ them.
There are at least two strands of thought to be disentangled here. The irst
is the concern that attempts to eliminate or cure genetic conditions will
lead to a society that is less tolerant of disability. This is typically countered
by an argument that the object of these attempts is not the people but
the conditions (Chadwick 1999). At this point the second strand comes
into play, which is that it is not possible to distinguish these two elements,
because their identity is dependent upon their genetic condition. Beyond
the relatively familiar debates surrounding genetic conditions of a health-
affecting sort, however, other developments such as behavioural genomics
and genetic ancestry tracing can have far-reaching implications for indi-
viduals’ sense of self and have the potential to affect social and political
rights in addition to their relevance to the right to know and not to know.
Comparative genomics has further identity implications: for our self-iden-
tity as a species in relation to others. This may be perceived as threatening
in some way, as is the prospect, for some, of hybrid embryos.

Personal health
One promised outcome of population genomic research has been per-
sonalised health advice, in the context of both medication and nutri-
tion. Pharmacogenomics aims to identify the genetic factors involved
in drug response and to facilitate the avoidance of adverse drug reac-
tions. Nutrigenomics plays an analogous role in relation to food and
food ingredients, enabling personalised nutritional advice for optimum
health. In the case of pharmacogenomics the argument for a right to
know is clear: it makes sense to say that if someone’s genetic make-up
is such that they have a higher than normal risk of responding adversely
to a particular drug, then they have a right to know that they should not
take it. It has also been argued that this kind of genetic information is less
20 Ruth Chadwick, Mairi Levitt and Darren Shickle

sensitive than other types of genetic information – the fact that someone
should not take drug B has less potential to be damaging, if disclosed
inappropriately, than information that they have a genetic predisposition
to developing a late onset condition, for example. However, this argu-
ment depends on the assumption that the drug-related information is
not linked or linkable to other more sensitive information.
Some of the worries about personalised medicine arise in connec-
tion with its implementation. Different scenarios are considered here in
Barbara Prainsack’s Chapter 7. The rise of companies offering direct-
to-consumer tests has led to criticisms over how the results might be
interpreted, conveyed and misused. There are also concerns about what
tests are offered, and the time at which tests may be offered. Whereas
it may be considered acceptable for an autonomous adult to decide to
undertake genetic testing, on the grounds of a right to know, what of
whole genome sequencing at birth, or even prenatally, for the purposes
of personalised predictive medicine?
In principle, in the context of nutrigenomics, there is also an argu-
ment for a right to know diet-related genetic information in so far as it
could be of beneit to health prospects. However, there is more scepti-
cism about the value of the information in nutrigenomics (Müller and
Kersten 2003). In the nutrition context, also, as Korthals points out in
Chapter 13, the relevant rights issues range far beyond genomics, to
include questions about the source, production and content of what we
are eating. Nevertheless there are some issues analogous to pharmaco-
genomics. Whereas drugs are well-characterised substances acting on
speciic targets in the body, foodstuffs are far more complicated, and the
dificulty of establishing reliable associations is therefore greater. Even in
the pharmacogenomics context, however, there has been concern about
achieving suficient statistical power to ensure the reliability and replic-
ability of association studies, and calls for oversight of these (Human
Genome Organisation 2007).
Although the prospect of tailored dietary advice may seem attractive,
there are also arguments for a right not to know here. While some may
see the provision of such personal information as empowering, there may
be concerns about political agendas behind it, such as putting responsi-
bility for health squarely on the shoulders of individuals. This is an issue,
for example, in the light of the purported obesity problem. Providing
individuals with information, including genetic information, may be pro-
moted in the name of choice, but there is a question as to whether what
is at stake is the freedom to make any choice or whether there is a pre-
supposition that there is a ‘right’ choice, leading to individuals being held
responsible for wrong choices in particular.
 The right to know and the right not to know 21

Whole genome sequencing

The new generation of sequencing technologies massively increases the
density of analyses that can be performed in a single run, as compared
with conventional sequencing. The prospect of whole genome sequen-
cing changes the whole scope of the right to know and right not to know
debate. While there have always been issues concerning disclosure of inci-
dental indings (e.g., non-paternity), the possibilities of whole genome
sequencing open up the prospect of knowing everything in the genome.
There is of course a question about the extent to which the volume of
information will be meaningful, at least in the early stages of this devel-
opment, but are there grounds for thinking that the privacy concerns
are increased? If there is concern about access to the knowledge about
one’s genome, does the volume of information that may be accessed give
rise to a parallel increase in the concerns about privacy? Even if to know
someone’s genome is not to know everything about a person, perceptions
may suggest otherwise.

Trends in ethical approaches

It is not necessary to subscribe to full-blown genetic exceptionalism
to take the view that there have been developments in ethical thinking
alongside the developments in genomics and in the social and political
contexts in which these have taken place. The primacy of autonomy as
an ethical principle has come increasingly under challenge, at least partly
because it cannot do all the work in genomics. Different interpretations
of autonomy (for example, relational autonomy) also continue to be dis-
cussed. In the 1997 volume Jørgen Husted identiied two conceptions of
autonomy relevant to the right (not) to know debate, a ‘thin’ one which
was typically used to support the beneits of genetic information; and a
‘thick’ one which supported a right not to know (Husted 1997, reprinted
in this volume as Chapter 2).
Since then solidarity has become more prominent as a principle in
bio- and global ethics (Nufield Council on Bioethics, 2011). In gen-
omics it has been regularly appealed to through the irst decade of the
twenty-irst century. A piece in Science (Knoppers and Chadwick 1994)
identiied the principles that were then informing genetic research, and a
decade later the same authors claimed that there were ‘emerging trends’
in ethics, speaking of a turn towards equity, mutuality, reciprocity and
solidarity (Knoppers and Chadwick 2005). It should be emphasised
that these principles are not new, but draw on older traditions of ethical
thought. The point is that it is not possible to rely on individual informed
22 Ruth Chadwick, Mairi Levitt and Darren Shickle

consent to do all the ethical work in the context of developments such

as genetic databases. Ethical considerations relating to participation in
research and sharing the beneits require alternative frameworks (see,
e.g., Chadwick and Berg 2001). Despite evidence of a ‘communitarian
turn’ in this context (Chadwick 2011), there is a view that just as auton-
omy cannot do all the work in all circumstances, neither can solidarity
(see Chapters 6 and 7 by Levitt and Prainsack). Ethics is still developing
in this area, alongside the science.
The trend towards rethinking the concept of privacy has already been
mentioned and the need to be clear about what is involved is discussed
in this volume by Laurie. In the 1997 volume Tony McGleenan asked
if there should be a genetic privacy law. It is now clearer than ever that
if we could rely on public institutions to adhere completely to regula-
tions on data protection, there is still a need to look at the issues in dif-
ferent ways. In the genomics context, there has been a suggestion that
emphasis on privacy should be replaced by the concept of open consent
(Lunshof et al. 2008). The concept of open consent is used in the context
of the Personal Genome Project, which aims to build a framework for the
development and evaluation of personal genome technologies. Towards
this end, open consent implies that research participants accept that their
data may be included in an open-access database with no guarantees
of privacy and conidentiality. At the time of writing, the trend, how-
ever, at the level of discussion of the draft European Regulation on Data
Protection, appears to be towards a more conservative view (European
Commission 2012).

Prospects for the future

So how is the debate on the right to know and the right not to know likely
to develop? The pace of development of the technologies is very fast:
ethical thinking is faced with the move towards greater ‘personalisation’,
on the one hand, and more global developments on the other, in relation
both to the facilitating of international biobanks (requiring consideration
of the harmonisation of standards and ethics) and to claims for sharing
the beneits that genomics has to offer on a global scale. The discussion
of rights to know and not to know has to be continually renegotiated in
the light of these interests in tension.

References
Chadwick, Ruth 1999. ‘Gene therapy and personal identity’, in Gerhold K.
Becker (ed.) The Moral Status of Persons: Perspectives on bioethics. Amsterdam:
Rodopi, pp. 183–94.
 The right to know and the right not to know 23

Chadwick, Ruth 2011. ‘The communitarian turn: myth or reality?’, Cambridge

Quarterly of Healthcare Ethics 20(4): 546–53.
Chadwick, Ruth and Berg, Kåre 2001. ‘Solidarity and equity: new ethical frame-
works for genetic databases’, Nature Reviews Genetics 2: 318–21.
Chadwick, Ruth and O’Connor, Alan 2013. ‘Epigenetics and personalized medi-
cine: prospects and ethical issues’, Personalized Medicine 10(5): 463–71.
European Commission 2012. Proposal for the EU General Data Protection
Regulation. Available at: http://ec.europa.eu/justice/data-protection/docu-
ment/review2012/com_2012_11_en.pdf (accessed 8 July 2013).
Gymrek, M., McGuire, A. L., Golan, D., Halperin, E. and Erlich, Y. 2013.
‘Identifying personal genomes by surname inference’, Science 339(6117):
321–4.
Hildebrandt, Mireille 2008. ‘Deining proiling: a new type of knowledge?’ in
M. Hildebrandt and S. Gutwirth (eds.) Proiling the European Citizen: Cross-
disciplinary perspectives. Dordrecht: Springer, pp. 17–45.
Human Genome Organisation 2007. Statement on Pharmacogenomics, Solidarity
and Equity.
Husted, Jørgen 1997. ‘Autonomy and a right not to know’, in Ruth Chadwick,
Mairi Levitt and Darren Shickle (eds.) The Right to Know and the Right Not
to Know. Aldershot: Avebury, pp. 55–68.
Knoppers, Bartha and Chadwick, Ruth 1994. ‘The human genome project:
under the international ethical microscope’, Science 265: 2035–2036.
Knoppers, Bartha and Chadwick, Ruth 2005. ‘Human genetic research:
emerging trends in ethics’, Nature Reviews Genetics 6: 75–79.
Knoppers, Bartha M. and Saginur, M. 2005. ‘The Babel of genetic data termin-
ology’, Nature Biotechnology 23(8): 925–7.
Lunshof , Jeantine, Chadwick, Ruth, Vorhaus, Daniel B. and Church, George M.
2008. ‘From genetic privacy to open consent’, Nature Reviews Genetics 9:
406–11.
McGleenan, Tony 1997. ‘Should there be a genetic privacy law?’ in Chadwick
et al. (eds.), pp. 43–54.
Müller, M. and Kersten, S. 2003. ‘Nutrigenomics, goals and strategies’, Nature
Reviews Genetics 4: 315–22.
Nissenbaum, Helen 2009. Privacy in Context:Technology, policy, and the integrity of
social life. Stanford University Press.
Nufield Council on Bioethics 2011. Solidarity: Relections on an emerging concept
in Bioethics. London.
2 Autonomy and a right not to know

Jørgen Husted

A problem out of a problem

Genetics and diseases of genetic origin inescapably involve families.
Thus genetic information obtained by testing one person may contain
information of the same kind on one or more other persons. These other
persons are, so to speak, being tested indirectly by the original test. Now,
the justiication for testing the irst person is the recognition that this per-
son has an interest in knowing the relevant information. The knowledge
may be sought to gain a better background for reproductive decisions or
for undertaking measures preventive of future health problems caused by
genetic disease or susceptibility. This leads to the conclusion that each of
the other persons concerned has the same interest in knowing the infor-
mation about herself or himself.
But suppose the person who has undergone the test does not want the
indings to be passed on to the other family members? In its report on
the ethical issues of genetic screening the Nufield Council on Bioethics
offers the following example:
A man diagnosed with a mild form of adrenoleukodystrophy (ALD), an X-linked
condition that can be carried by healthy females, did not wish his diagnosis or the
genetic implications to be discussed with his family. Seven years later, his niece
gave birth to two successive boys who have a more severe form of ALD. The ill-
ness only came to light in them when the elder boy started to display symptoms.
The mother’s sister, the man’s other niece, has also given birth to a son subse-
quently diagnosed with ALD. Both families are bitterly resentful that the medical
services did not warn them of their genetic risk.
(Nufield Council on Bioethics 1993, p. 42)
In this kind of situation an ethical dilemma arises between the right of
the individual to personal privacy on the one hand and the interest of
family members to be made fully aware of available information which
would play a part in making important life decisions on the other. More
directly it presents itself to the doctor as a conlict between the duty of
conidentiality owed to the patient and the regard for the third parties

24
 Autonomy and a right not to know 25

who are likely to be harmed or at least forego a major beneit due to

non-disclosure. The doctor’s duty of conidentiality is strongly supported
by two considerations: the individual’s right to privacy and the uphold-
ing of trust and conidence in the doctor/patient relationship generally.
However, as the Nufield Council on Bioethics (1993) and also Ruth
Macklin (1992) point out, this duty is not absolute. In very special cir-
cumstances it may be overruled in the public interest or for preventing
injury or severe health damage to other individuals. Both argue that the
same kind of exceptional overruling may apply to the genetic context
as well. No general rule can be given and the doctor has to perform a
very delicate exercise in balancing the risks and harms of non-disclo-
sure against those of disclosure. Ruth Macklin suggests that there are
cases, albeit few, in which an actual duty to disclose genetic information
emerges (1992, p. 163). The Nufield Report concludes that the third
party’s interest is to be considered strong enough to support ‘a legitimate
right to know’ and it even discusses, though inally rejecting it primarily
out of pragmatic reasons, whether there should be a legally enforceable
duty of disclosure to family members placed on people who have been
tested and on their medical service (Nufield Council on Bioethics 1993,
p. 53).
Now, within this ethical problem another one seems to be lurking
in the background. If the person who has been tested or that person’s
doctor, perhaps overruling the duty of conidentiality, approaches the
unsuspecting family member with the inding, this latter person is quite
defenceless. As it seems, the alleged right to know does not comprise a
right not to know. But by the very approach the ‘cat has been let out of
the bag’. Either this person comes to know the new personal informa-
tion or, at least, comes to know that there is something to know that is
considered quite urgent for her or him to know. A wholly new situation
has been created: the irreversible loss of genetic informational innocence
is a fait accompli.

Paternalism revived?
A irst reaction to this problem could be to acknowledge that there
is a signiicant difference in status between the two persons involved.
Whereas the irst person has given informed consent both to being tested
and to being informed of the indings, the latter person deinitely has
not. However, the requirement of obtaining informed consent is meant
to ensure voluntariness and adequate understanding – that is, to rule out
any form of compulsion, deceit, misinformation and manipulation – as a
necessary condition for performing a medical intervention on a person.
26 Jørgen Husted

This requirement clearly applied to the irst person, this being a case of
a person who has to decide whether to undergo a medical intervention
or not. In the case of the unwitting family member there is no med-
ical intervention and the relative or the doctor is only offering to impart
some already available information that the person has a clear interest in
knowing.
If one is to take the principle of informed consent seriously this reac-
tion will not do. The principle grew out of the critique of medical pater-
nalism according to which the doctor is justiied to act, with or without
consent, to promote what is perceived from the medical point of view
as the patient’s best interest. As the doctor is taken to be in the best
position to know what is best for the individual patient the so-called
therapeutical privilege gives the doctor the right of usurping the decision
making, even in relation to fully competent adult persons. One major
point against medical paternalism was simply that since a person can
have different and competing interests, what is in this person’s overall
best interest might very well be different from what is perceived as such
from the narrow medical point of view. In itself this point strongly sup-
ports the requirement of informed consent. Now, the justiication for
performing the genetic test on the irst family member was not that this
person has an interest in knowing the relevant information (the interest
shared with the family member). The justiication was that this person
after mature and well-informed consideration decided to give priority to
this interest. However, the very fact that the other family member has
the same interest in no way justiies the assumption that she or he would
reach the same decision. Thus the unsolicited disclosure, whether by the
relative following the doctor’s strong suggestion or by the doctor acting
independently, seems to be a clear-cut case of strong medical paternal-
ism. Acting solely from the medical point of view, the decision ‘To know
or not to know?’ is taken out of the hands of the unsuspecting individual,
for her or his own good, of course.
A more sophisticated response grants the above but seeks to put the
matter in the right light by linking informed consent directly to the con-
cept of (personal) autonomy. According to this the very point of insisting
on the principle of informed consent in the medical context is to uphold
in this area a general right to autonomy, that is, a right for persons to
make important decisions deining their own lives for themselves. What is
wrong with medical paternalism is not so much the assumption that the
doctor knows best as the usurpation of decision making. Ethics demands
fundamentally that adults of normal competence be respected as respon-
sible decision makers in matters pertaining to themselves. The important
thing is not that the best decision is found, but that the person concerned
 Autonomy and a right not to know 27

reaches a decision that she or he considers the best. Denying people this
right to autonomy, even out of the most benevolent motives, is denying
them respect for their dignity as persons, as beings who are able to think
and choose for themselves. Now, in the case of unsolicited disclosure,
the decision to know or not to know is of course being taken out of
the hands of the person concerned. This case is, however, signiicantly
different from the much-criticised cases of paternalism where the doc-
tor decides on irreversible interventions without consulting the patient
about her or his view on the alternatives. This constitutes a clear reduc-
tion of autonomy, a closing of options, and is being done in the name of
values other than autonomy, such as welfare, health or survival. In the
case of unsolicited disclosure, on the other hand, what initially seems to
be a denial of autonomy is just the opposite: it is done in the name of
autonomy and the result is an enhancement of autonomy, an opening of
options. As the important information has become available and is there
to be made use of or not, is it not quite clear that a respect for persons as
decision makers demands that they be given and not denied this infor-
mation? Maybe some persons will resent the disclosure, at least as a irst
reaction, and will come to worry and agonise about new challenges and
fears. But all this is part and parcel of being a responsible decision maker.
Thus the challenge of paternalism can be evaded. Unsolicited disclosure
violates autonomy in a formal sense, but respects and enhances it in a
substantial sense – the very one that makes the formal one so important.
In her discussion of a duty to disclose Ruth Macklin puts this way of
thinking quite clearly:
If such information (viz. genetic information that can substantially affect a
patient’s relatives) is disclosed, it can enable them to make reproductive deci-
sions and other life plans in accordance with the newly revealed information.
Without adequate information, people cannot make informed choices and deci-
sions related to their own health and well-being.
(Macklin 1992, p. 163)
Put this way, unsolicited disclosure to relatives seems quite unproblem-
atic from an ethical point of view.
The Nufield Report dwells on several psychological problems, arising
especially where some family members do not wish to be presented with
the information, and notes ‘this would become a much more serious
problem if widespread screening were introduced for X-linked or auto-
somal dominant diseases’ (Nufield Council on Bioethics 1993, p. 49).
In view of this latter remark and the astonishing speed of the develop-
ment of genetic research it is important to investigate further the above
reasoning that tends to give unsolicited disclosure to unwitting relatives a
irmly established and ethically unproblematic place in clinical practice.
28 Jørgen Husted

Since the concept of autonomy is pivotal in justifying the reasoning, this

is where we will proceed next.

Autonomy: the thin conception

Although there is only one concept of autonomy there are, when it comes
to explaining it, several conceptions of autonomy. For the purpose at
hand the following two will sufice. Both agree that autonomy is the run-
ning of one’s own life according to one’s own lights: people are said to
be autonomous to the extent to which they are able to fashion their own
lives, and to some extent their own destiny, by the exercise of their own
faculties in successive choices during their lives. The irst – thin – con-
ception of autonomy aims to explain the autonomous person and the
autonomous life by way of explaining the kind of choice characteristic-
ally made by the former and deining the latter, that is, the autonomous
individual choice. The idea is that an agent’s decision will be maximally
autonomous where:
1 there are no apparent defects in the individual’s ability to control
either his or her desires or actions or both;
2 there are no apparent defects in reasoning, or no defects in reasoning
which would bear on the validity of the conclusions upon which the
agent’s decisions are based;
3 there are no apparent defects in the information available to the
agent and which are germane to the decision at hand (Harris 1985,
p. 201).
The usual background for this thin account of autonomy is a preference
or desire satisfaction theory of the good for persons. According to this,
what is good for persons is for them to have their desires or preferences
satisied to the maximum extent possible over their lifetimes. So on the
one hand there is the person’s wishes or preferences. Some of these are
short-term, others are long-term wishes, perhaps even a life plan. Among
the latter could be wishes for the following: a happy family life, good
health, beauty, wealth, power, social prestige, deep involvements with
other people, personal independence, self-realisation, to see the world,
to lead a quiet and pleasant life, enjoying oneself as much as possible,
strong and varied excitements, intellectual achievement, a successful car-
eer in a certain walk of life, and social and spiritual security. Given his or
her long-term preferences the person successively develops short-term
preferences, the satisfaction of which is considered conducive to the sat-
isfaction of the long-term ones, such as having at least three healthy chil-
dren, taking up a career in dentistry, keeping it, travelling and so on. The
 Autonomy and a right not to know 29

person’s wishes or preferences are something given about him or her: the
person inds himself or herself as a person with this kind of inclination.
They are the person’s own wishes, part of the individual’s set-up. Also,
they can only be criticised rationally in so far as they can be shown to be
either clearly unrealistic or based on false beliefs. On the other hand there
is the person’s decisions and actions. Their whole point is the instrumen-
tal one of contributing to the person’s good by serving the satisfaction of
his or her short-term and long-term preferences. Thus they can be criti-
cised rationally as more or less well informed, well considered, realistic
or well suited to achieve various goals. An important consideration here
is of course whether they are autonomous in the above sense.
This approach offers a very clear justiication of the principle of
informed consent in health care, at least as soon as it is recognised that
the goal is the promotion of the individual’s good, not just his or her
health. Thus R. M. Hare writes:
on the whole people are the best judges of what will be best for them in the
future. They are likely to predict more correctly than any doctor what will be
best for themselves. For people’s ideas of what is a good life vary enormously,
and doctors are, these days, seldom in a position to know a patient well enough
to predict them. The doctor can usually predict better than the patient what the
consequences of a particular treatment will be; but he is not expert on how the
patient will like these consequences. Therefore, in deciding on a treatment, the
doctor should be guided by the patient’s idea of the best life, and not impose his
own.
(Hare 1994, p. 154)
Since people generally are the best judges of their own good their auton-
omous decisions relating to that matter should be respected. A doctor is
always in the wrong if he or she goes against a person’s autonomous deci-
sion of this kind. First, the doctor actually wrongs this person by acting
against the person’s good and, second, the doctor jeopardises the whole
relationship between doctors and the public, as much harm is likely to
ensue both for the profession as a whole and for individual patients, if
autonomy comes to be disregarded.
Now, seen from this ethical perspective, the above, preliminary char-
acterisation of unsolicited disclosure as ethically quite unproblematic
can be endorsed. First of all, in such cases there is clearly no question
of doing the wrong thing, that is, going against a person’s autonomous
decision relating to his or her own good. Also, the information revealed
is information of great importance for the individual’s ability to make
decisions and consider short-term preferences with a view to achieving
the maximal satisfaction of long-term preferences. Thus, revealing the
information is, very literally, for the person’s own good.
30 Jørgen Husted

Though everything now seems all well and good there remains a prob-
lem and this points towards the second – thick – conception of autonomy.
A person may decide to undergo a genetic test, the result of which is very
likely to be devastating by revealing an incurable condition that will mean
within a few years the end of his or her life and all his or her aspirations.
His or her reason for doing this is to provide vital information for a number
of his or her close relatives. As he or she is the irst to admit, it is deinitely
not done for his or her own good in the above sense. On the contrary, the
person decides against his or her own good, sacriicing it out of a deeply felt
moral obligation overruling all of his or her personal preferences. The prob-
lem now is that, according to the principle of informed consent, his or her
decision should be respected even though, by his or her own admission, it
is not an autonomous decision of the kind that was crucially appealed to in
the above justiication for this principle, that is, an autonomous decision in
the area where the person concerned is the best judge – pertaining to pro-
moting his or her own good. Going against a person’s decision of that kind
would be wrong although it would not be an instance of going against a per-
son’s autonomous choice relating to his or her own good. There are many
well-known cases of this kind, such as people who decide to forego neces-
sary medical treatment either because they believe other people need it
more or because they want the expenses avoided in order to save the money
for the beneit of a child’s education, for example. What they show is that
the justiication of the principle of informed consent is not fully explained
by reference to the claim that people are the best judges of their own good.
This claim has to be supplemented by independent considerations.1

Autonomy: the thick conception

In the following quotation the gist of this way of thinking is eloquently
expressed by Sir Isaiah Berlin:
I wish my life and decision to depend on myself, not on external forces of what-
ever kind. I wish to be the instrument of my own, not of other men’s acts of will.
I wish to be a subject, not an object; to be moved by reasons, by conscious pur-
poses, which are my own, not by causes which affect me, as it were, from outside.
I wish to be somebody, not anybody; a doer – deciding not being decided for,
self-directed and not acted upon by external nature or by other men… I wish,
above all, to be conscious of myself as a thinking, willing, active being, bearing
responsibility for his choices and able to explain them by reference to his own
ideas and purposes.
(Berlin 1969, p. 123)

1
cf. R. Dworkin’s discussion of this point (Dworkin 1993, chapter 8).
 Autonomy and a right not to know 31

The ideal of the person outlined here is the ideal of personal autonomy
as self-determination, or self-deinition.2 It is readily contrasted with the
preference satisfaction theory of the good for persons. First, a person’s
decisions and actions are not seen as of primarily an instrumental func-
tion and value, as the means for achieving the satisfaction of already given
preferences. Instead human well-being is thought of under the category
of activity, as the successful pursuit of freely chosen goals, the thought
being that what persons are is, in signiicant respects, what they become
through successive choices and actions during their lives – their lives are
a continuous process of self-creation. What makes a life ours is that it is
fashioned by our choices, is selected from alternatives by a human being
taking his or her life seriously and wanting to be, and be recognised by
others as, the kind of person who makes decisions and accepts responsi-
bility for them.
Also, a person’s preferences or goals are not to be considered as given
and outside the reach of critical evaluation. What makes self-determina-
tion possible is the unique capacity of the human person for relective
self-evaluation, for considering what they want their motivation to be, for
forming higher-order wants and preferences deining what they for them-
selves ind it worth being and worth doing in life and trying, sometimes
successfully, sometimes not, to change their given preferences and incli-
nations in light of what they have come to care about, their higher-order
goals and values. By exercising this capacity, people determine their lives
and themselves, create meaning and coherence and take responsibility
for their lives and character.
It is here of great importance to distinguish between autonomy as an
achievement, the autonomous life created by the person, and autonomy
as a capacity. To lead an autonomous life a person needs to have certain
conditions fulilled. These are the various mental and linguistic abilities
needed to exercise self-evaluation and self-control, independence in the
sense of absence of external interference with decision processes and with
actions, and a reasonable range of valuable options in the important self-
deining situations throughout the various periods of life. Personal auton-
omy in the primary sense is irst here, the idea of an autonomous life. Also
what primarily has value is the autonomous life, the value of autonomy
in the capacity sense being only contributional to this, not of value inde-
pendently of its use. Autonomous decisions are, ideally, decisions that it
into an autonomous life, a life freely chosen. And as Joseph Raz puts it:

2
For further discussions of autonomy as self-determination cf. R. Dworkin (1993, chap-
ter 8), G. Dworkin (1988), Raz (1986, chapter 14), and Lindley (1986).
32 Jørgen Husted

It is a life which is here primarily judged as autonomous or not, and it is so

judged by its history … the autonomous life is discerned not by what there is in
it but by how it came to be. It is discerned, if you like, by what it might have been
and by why it is not other than it is.
(Raz 1986, p. 371)

In this connection Raz argues very convincingly that autonomy and the
kind of autonomous choosing that is constitutive of self-determination
requires not only a free choice but a choice between valuable or good
options. In a sense the choice between good and evil is no choice at all.
Someone with the choice between becoming an electrician and having to
murder someone else is not choosing autonomously if he or she chooses
to become an electrician. His or her choice is forced: if he or she wants
to be moral, he or she has no choice, being forced to ight for ‘moral
survival’:
Autonomy requires a choice of goods. A choice between good and evil is not
good enough. Remember that it is personal, not moral autonomy we are con-
cerned with. No doubt is cast on the fact that the person in the example is a
moral and fully responsible person. So are the inmates of concentration camps.
But they do not have personal autonomy.
(Raz 1986, p. 379)
Now the general point of the right to autonomy can be explained in a
new and, it seems, more satisfactory way. Respecting an individual right
to autonomy is an important part of making self-creation possible. The
point of the right is to protect and encourage the capacity to take respon-
sibility for one’s life and express one’s personality, commitments, con-
victions and vision of the good in the life one leads. And when people
insist on their right to autonomy this is often done in the name of self-
determination. They value being able to decide for themselves because
they value being, and being recognised by others as, the kind of person
who is capable of determining and taking responsibility for his or her
destiny. To them the ideal of self-determination offers an attractive vision
of what human beings can be and they hold this ideal for noninstru-
mental reasons. Being recognised as a person capable of choosing and
taking responsibility for her or his choices, and of course actually mak-
ing choices of this kind, has intrinsic value quite apart from the conse-
quences and satisfactions lowing from it.
The principle of informed consent can now be seen as an application
to the medical context of the right to autonomy explained in this way
(Brock 1993, chapter 1). What is wrong about medical paternalism is
not primarily or solely that the doctor by deciding for the patient may be
wrong, or more likely to be wrong than the patient, in the estimation of
the patient’s good. What is wrong is the usurpation of decision making as
such. Many of the decisions to be made in clinical practice, for example
 Autonomy and a right not to know 33

between alternative forms of treatment or between treatment and non-

treatment, are neither simple technical decisions nor decisions of the
relatively simple kind where the task is to ind the best solution given one
or more rather clear personal preferences. Often the very idea of deter-
mining what is best is quite out of place. There is no question of who is
the better judge of the patient’s good, the doctor or the patient. A deci-
sion is called for, to choose this future or this other very different kind
of future, to take responsibility for following this path ahead rather than
another. Here the patient has to choose among values and the doctor’s
role is to help clarify the values, possibilities and consequences and, as
far as possible, create valuable options suited to the individual’s unique
situation. In other words, many of the decisions to be made in clinical
practice clearly belong to the self-deining kinds of decision that the right
to autonomy is meant to protect and encourage.
From this new perspective the matter of the unsolicited disclosure
of genetic indings to unsuspecting relatives begins to present itself
as quite problematic. Taking the decision of whether to know or not
to know out of the person’s hands is a case of doing the wrong thing,
being a clear case of usurpation of decision making. Also, the response
that this violation of formal autonomy is justiied by the enhancement
of autonomy in a substantial sense is no good any more. The fact that
the person receives new and relevant information does not in itself jus-
tify a claim of enhancement of autonomy. Before turning more directly
to the latter point it is worth noting that if the response were uncon-
troversial it would be quite dificult to make sense of the existing eth-
ical codes for genetic testing , stipulating the requirements of genetic
counselling prior to testing, informed consent and non-directiveness
in genetic counselling. The point of these requirements cannot just
be to ensure voluntariness (no compulsion, manipulation, etc.) and a
proper level of information. Their point must be to make choice pos-
sible, recognising that the choice to undergo a genetic test may have
serious consequences of a kind that may make it fully understandable
for a responsible and rational person to end up declining the offer of
genetic testing. If the response appealing to the alleged enhancement
of autonomy in the case of unsuspecting relatives were uncontrover-
sial it would by the same token be quite uncontroversial for the doctor
just to seek assent and not informed consent from the person invited to
undergo a genetic test.

A mixed blessing?
As already mentioned, in their discussion of the dilemma between the
doctor’s duty of conidentiality and the relative’s interest in knowing,
34 Jørgen Husted

need to know, or even the right to know, both the Nufield Council on
Bioethics and Ruth Macklin cite cases to show that the duty of coniden-
tiality is not absolute. The relevant cases stem from outside the ield of
applied human genetics, dealing with very dangerous mentally ill patients
or patients with dangerous infectious diseases. Here the third party needs
to be warned that somebody is out to kill or grievously harm her or him
in one way or another. In the genetic context the kind of information
to be received by the unwitting relative is of course of a totally different
character. Here a person may learn things of the following kind about
himself or herself:
1. that the person is a carrier so that having children by another carrier
might result in children with serious health problems;
2. that the person is a carrier who risks having children with serious
health problems and/or passing this very unwanted condition on to
future generations;
3. that the person has a disease likely to be passed on to eventual off-
spring and future generations;
4. that the person has a presymptomatic condition that is likely to
develop into a condition with serious symptoms unless the person
undertakes certain draconian measures (radical change of lifestyle,
frequent medical check-ups, preventive surgery, etc.);
5. that the person has a genetic predisposition that may develop into a
serious disease unless precautions are taken – and may develop des-
pite precautions;
6. that the person has a genetic susceptibility for a serious multifactorial
disease that may be triggered by various environmental, psychological
and other more or less unknown factors that the person should guard
himself or herself against;
7. that the person suffers from a genetic disease, the manifest outbreak of
which may be postponed and made less severe if the person changes
his or her life in various drastic ways.
Now, in stark contrast to the cases involving a warning about highly dan-
gerous persons and infectious diseases, information of this kind is likely
to have a great impact not only on people’s feelings but on their lives as a
whole. Reactions such as the following are to be expected:
1. a decision not to marry and thus not to seek deep emotional involve-
ment with members of the opposite sex;
2. a married couple’s decision not to have children of their own;
3. trying to avoid any kind of dependants or deep involvement with other
people;
4. a married couple’s decision not to have any further children;
 Autonomy and a right not to know 35

5. terminating one’s one and only pregnancy by selective abortion;

6. giving up a career one has built the major part of one’s life around;
7. not marrying the person with whom one is deeply in love and trying to
ind a genetically more suitable partner for life and having a family;
8. giving up the chance of an attractive career or education for which
one clearly has the ability;
9. giving up most of the things in one’s life that one enjoys and inds
worth doing;
10. trying to avoid all kinds of life challenges that are bound to tax one’s
resources and, if one is to succeed, put one under great and long-
term strain.
Of course, there are alternatives to all such decisions of paramount
importance to the individual’s self-deinition. The person can always
choose to ignore the benevolent genetic warnings and just go ahead with
the life she or he has embarked, or is embarking, on. The person may
marry the one they love, have the children God gives, pursue the car-
eer and lifestyle of his or her choice with full vigour, become deeply
entwined in other people’s lives, accepting all the worthy challenges that
life throws in the way, hoping, dreaming, planning and striving for the
kind of life a human being is entitled at least to hope for. However, due
to the disclosure of the genetic information on him or her, nothing will
ever be the same again.
If and when the problems predicted by the genetic warning show
themselves in that person’s life they are now her or his responsibility
in a different way than if they had shown up without any kind of gen-
etic forewarning, namely as the normal hazards of life. If, for example, a
pregnant woman belonging to a special risk group chooses not to accept
the offer of foetal diagnosis and selective abortion, ‘then the disabled
child, to whom she eventually gives birth, is not only her responsibility
being the child’s mother: she is, in her own as well as in other people’s
eyes, responsible not only for the disabled child, but for having a child
that has a disability. It could have been avoided. As she did not use the
option created by the genetic service the new situation is her own choice’
(Dworkin 1988, chapter 5). Much the same goes for all the other kinds
of life problems met by persons who either choose to ignore the genetic
warnings or ind themselves unable to follow the instructions coming
with the warning.
Thus it seems quite controversial whether the disclosure of genetic
indings to unsuspecting persons is to be thought of as an enhancement
of autonomy. In many cases of the kinds considered here it is rather mis-
leading to think of them as cases where a person has a number of long-
term preferences for herself or himself and then receives some useful,
36 Jørgen Husted

although maybe also worrying, information, with the help of which he

or she is put in a situation better to steer a safe way towards preference
satisfaction, avoiding some blind ends, uncharted cliffs and unhelpful
projects. One could instead argue that in many such cases what were
initially very valuable options for the person to choose (for one set of rea-
sons) or not to choose (for a different set of reasons) were being closed
due to the disclosure. Of course, the option still remained open for the
person, but the reason why he or she did not choose it was not that
another one was considered more valuable. The reason was that she or
he could not take the responsibility for choosing it, i.e. choosing it being
aware of the genetic warning, because it would be a morally wrong thing
to do, starting a family, for example, knowing in advance what kind of
suffering this is bound to create for other people. Where the person con-
cerned was formerly pondering the various options for trying to make
something worthwhile out of life, accepting the normal hazards of life,
she or he may now be struggling for moral survival. And as a result of
this the history of that person’s life may very well not be the history of an
autonomous life, a life whose contents, for a signiicant part, are freely
chosen among different and morally valuable alternatives. The history
of that person’s life might rather come to resemble the life of the person
who had to become an electrician in order not to have to murder some-
one else – a life of morally forced choices.

Moralism as well as paternalism?

In their discussions of the duty to disclose and the right to know, both
the Nufield Council on Bioethics and Ruth Macklin give pride of place
to the interest of family members to be made fully aware of available
information which would play a part in making important life decisions.
However, it now seems that there might also be quite another interest of
family members: the interest of making important life decisions without
the interference of genetic information on themselves and their prospects
in life. Perhaps it could even be argued, appealing to the right of auton-
omy, that people have a right not to know, not to be told and not to be
approached unwittingly by benevolent relatives or medical services.
Remarkably, the Nufield Report as well as Ruth Macklin take for
granted that the relative should be presented with the information that
has become available. They argue that health professionals should seek to
persuade individuals, if persuasion should be necessary, to allow the dis-
closure of relevant genetic information to other family members (Macklin
1992, p. 164; Nufield Council on Bioethics 1993, p. 53). In its list of key
ethical principles of genetic counselling, the Nufield Report irst insists
that counselling at each stage of the process should be non-directive,
 Autonomy and a right not to know 37

as far as possible. It then goes on to stipulate as one of the key ethical

principles that the assurance of conidentiality should be coupled with
an emphasis on the responsibility of individuals with a positive (abnor-
mal) result to inform partners and family members (Nufield Council on
Bioethics 1993, p. 37). The background of this principle is the following
consideration:
As a starting point, we adopt the view that a person acting responsibly would
normally wish to communicate important genetic information to other family
members who may have an interest in that information, and that a responsible
person would normally wish to receive that information, particularly where it
may have a bearing on decisions which he or she may be called upon to take in
the future.
(Nufield Council on Bioethics 1993, p. 49)
It has already been argued that the conclusion to take the decision
whether to know or not to know out of the unwitting family member’s
hands can be characterised as strongly paternalistic in relation to that
person. It now seems dificult to avoid the impression that moralism is
added to paternalism. According to the above, the health professional
should tell the patient what her or his moral duty is in relation to a
third person. If necessary, the health professional should enlighten the
patient on what the concept of a responsible person amounts to in the
context of applied human genetics. So, on the one hand the profes-
sional should avoid any kind of directiveness in counselling on medical
options, possibilities or probabilities and, on the other hand, should be
strongly directive in her or his counselling on general ethical matters
and speciic human relations in which the professional has no profes-
sional expertise at all.

References
Berlin, J. (1969). Two Concepts of Liberty. Oxford: Clarendon Press.
Brock, D. (1993). Life and Death. Cambridge University Press.
Dworkin, G. (1988). The Theory and Practice of Autonomy. Cambridge University
Press.
Dworkin, R. (1993). Life’s Dominion. London: Harper Collins Publishers.
Hare, R. M. (1994). ‘Utilitarianism and Deontological Principles’, in Gillon,
R. (ed.), Principles of Health Care Ethics. Chichester: John Wiley and Sons,
pp. 149–59.
Harris, J. (1985). The Value of Life. London: Routledge.
Lindley, R. (1986). Autonomy. London: MacMillan.
Macklin, R. (1992). ‘Privacy and Control of Genetic Information’, in Annas, G.
J. and Elias, S. (eds.), Gene Mapping. Oxford University Press.
Nufield Council on Bioethics (1993). Genetic Screening: Ethical issues. London:
Nufield Council on Bioethics.
Raz, J. (1986). The Morality of Freedom. Oxford University Press.
3 Privacy and the right not to know: a plea for
conceptual clarity

Graeme Laurie

Introduction
The contribution of this chapter is two-fold. First, it argues for conceptual
clarity in the debates about the right to know and the right not to know
by suggesting that the most appropriate framing mechanism to conduct
such discussions – and ultimately to give effect to any such rights – is
through an understanding of the symbiotic relationship between notions
of personal autonomy and privacy. Importantly, the claim is made that
the right to know and the right not to know should not be seen simply
as two sides of the same conceptual coin. Different interests are at stake
with each putative ‘right’, and, albeit overlapping, we cannot give proper
effect to either right without this deeper understanding.
The second contribution of this chapter is to ask whether and how
legal effect might be given to the most contentious of the two claims, that
is, the right not to know. It is argued that current legal paradigms, nation-
ally and internationally, fail to recognise the conceptual distinctiveness of
this kind of right-claim and, accordingly, there is little chance of effective
legal remedy for unwarranted disclosure of personal information to a
person about themselves. This, however, should not be lamented given
the subtle considerations and judgments that are in play. Discretion and
not duty should be the watchword when it comes to recognising any so-
called ‘right’ not to know.

What is at stake?
The triumph of autonomy in the medico-legal sphere is as intimidating
as it is impressive.1 Within the space of a few short decades, national,
regional and international legal regimes have come to embrace the
mantra of the crucial importance of self-determination as the principal
deining feature of a plethora of patients’ rights, and have accordingly
positioned the concept as the central feature of the regulatory and legal
1
See the healthy scepticism of Foster (2009).

38
 Privacy and the right not to know: a plea for conceptual clarity 39

landscapes governing patient/health-care professional relationships. It is

easy to forget contributions such as that made by Sheila McLean in the
1980s in A Patient’s Right to Know (McLean, 1989), which was entirely
consumed with the challenge of achieving due recognition in law and
professional practice of the importance of respect for patient autonomy
and the pursuit of patient-centred and appropriate informed consent.
Since then, and despite no explicit mention of autonomy in the ori-
ginal text of the European Convention on Human Rights (ECHR 1950),
the fundamentality of the concept in giving proper effect to the collec-
tion of human rights embodied in the instrument was recognised by the
European Court of Human Rights in 2002 in Pretty v. UK,2 in which it
said of the ECHR that ‘the notion of personal autonomy is an important
principle underlying the interpretation of its guarantees’.3 This recogni-
tion was largely afforded as an aspect of Article 8(1) ECHR: the right to
respect for private and family life.
More recently still, the Council of Europe and other international
bodies have extended autonomy-based claims with respect to the right to
know also to the right not to know, as illustrated by these two examples:
The Council of Europe Oviedo Convention on Human Rights
and Biomedicine (1997), Article 10(2) states: ‘Everyone is
entitled to know any information collected about his health.
However, the wishes of an individual not to be so informed
shall be observed.’ [emphasis added]
The UNESCO Universal Declaration on the Human Genome
and Human Rights (1997), Article 5c provides: ‘The right of
every individual to decide whether or not to be informed of the
results of genetic examination and the resulting consequences
should be respected.’ [emphasis added]
These attempts to cast the right not to know in law do so in a way that
suggests that this ‘un-right’ is unproblematically connected to the right
to know, linked as an aspect of one’s autonomy and the right to self-
determination.
Similar attempts to cast the right not to know as a feature of autonomy
appeared in the irst edition of this book. For example, Husted (reprinted
in this edition) supported it on the basis of a thick conception of auton-
omy as ‘self-deinition’:
What makes a life ours is that it is fashioned by our choices, is selected from
alternatives by a human being taking his or her life seriously and wanting to be,

2
Pretty v. UK 2002 35 EHRR 1.
3
Ibid., para. 61.
40 Graeme Laurie

and be recognised as by others as, the kind of person who makes decisions and
accepts responsibility for them.
(Husted 2014, p. 31)

He concluded that: ‘[t]aking the decision of whether to know or not to

know out of the person’s hands is a case of doing the wrong thing, being
a clear case of usurpation of decision making’ (Husted 2014, p. 33).
I would like to take issue with this assumption that claims to know or
not know are necessarily or even helpfully linked to our understandings
about autonomy, be they thick or thin.
In Husted’s analysis, it appears that the violation with which we should
be concerned is the removal of (unfettered) choice. I suggest that this is
questionable for three central reasons. First, this view tells nothing to the
bearer of the dilemma about whether information should be revealed
or not, save perhaps to support non-disclosure in all cases since only
then can they remain unimplicated in the usurpation of decision mak-
ing. But, of course, doing nothing is also an example of doing some-
thing, and so the quandary remains unresolved from the perspective of
individual choice. This reveals a second problem with such an auton-
omy-based approach: it fails to distinguish between situations involving
prior-expressed choices not to know and no choices at all. That is, while
prior-expressed autonomy might well be undermined by later disrespect-
ful disclosure of information in deiance of those earlier wishes, it is less
clear that a ‘usurpation of decision making’ takes place when entirely
unsolicited information is offered to someone who has never attempted
to exercise their autonomy over the information in question, probably
because they do not know that there is anything to know. This, in turn,
leads to the third concern with this kind of approach. It is eloquently
expressed by Wertz and Fletcher:
[T]here is no way…to exercise the choice of not knowing, because in the very
process of asking ‘Do you want to know whether you are at risk…?’, the geneticist
has already made the essence of the information known.
(Wertz and Fletcher 1991, p. 221)

The apparent unassailable link in contemporary bioethics and biolaw

between autonomy and choice – and importantly informed choice –
suggests that any attempt to facilitate autonomy, or to avoid usurping
autonomous decision making, could result in violation of the ‘right’ not
to know. Conversely, with the right to know the link between autonomy,
information and choice is clear and promoted by giving effect to the
right. Precisely the opposite is the case with the right not to know. By
giving information, seeking consent and promoting autonomy the very
essence or state of not knowing is compromised.
 Privacy and the right not to know: a plea for conceptual clarity 41

It is for these reasons that I have argued elsewhere (Laurie 1999; Laurie
2002) that the affront in these circumstances is the invasion of the private
sphere of life of the individuals who are approached.4 Put more simply,
the interest with which we are concerned is a privacy interest, and more
speciically it is a psychological privacy interest deined as being in a state
of (psychological) separateness from others. I suggest that this conceptu-
alisation of privacy reveals a core reason why the disclose/do not disclose
debate involves a genuine dilemma. It explains why – if we appreciate the
limits of autonomy and control in the discussion – we nonetheless still
have reason to wonder if there is good reason not to disclose. That reason
is related to an intuitive recognition of the presumptive inviolability of
the private sphere around individuals. We recognise that disclosure will
have consequences for individuals (and others), and the source of the
dilemmas here – and where autonomy cannot assist – is that the individ-
ual who is the focus of our attention is the very person who is removed
from having a say in the outcome. This conceptualisation allows us to
recognise a core sense of self that can be fundamentally affected – poten-
tially in an adverse way – by information disclosure.
This having been said, the dilemma is compounded by precisely the
opposite likelihood, that is, that the person’s situation and well-being
might be improved through disclosure. But this consideration speaks
more to the kinds of factor to take into account in weighing up the pros
and cons of disclosure, such as whether there is an effective intervention
for a medical condition, rather than the central concern of this chap-
ter, which is to argue for recognition of the fundamental human inter-
est at stake being one related to our privacy and not necessarily to our
autonomy.
A inal important consideration that also supports this analysis of priv-
acy as a state of separateness is that this conceptualisation does not adopt
a value-laden presumption that a state of separateness from others is
necessarily a good thing. The very language of the ‘right’ to know or
the ‘right’ not to know implies entitlement. These are normatively-heavy
claims that might not stand up under close scrutiny. To suggest that
human beings are in a state of (psychological) separateness from others
is not to make a normative claim ab initio as to whether that state should
be entered.
If we want to argue for the value and importance of this state of being
this must be done robustly. It can be constructed in various ways, includ-
ing the importance of psychological integrity for one’s own personality
development and/or the psychological or even psychiatric harm which

4
cf. Cannelopoulou Bottis (2000).
42 Graeme Laurie

could result from receiving ‘bad news’. This is not to argue, however,
that such a state of privacy should never be entered. Like all privacy
claims, it is not a claim to absolute protection. Rather, this concep-
tualisation helps us to understand both what might be at stake – less
a matter of one’s own choices and more a concern with unwarranted
intrusion – and how privacy and autonomy can and should be seen
as overlapping and yet distinct human values and interests (Parent
1983). It is very itting that both can be subsumed under the human
rights rubric of the ‘right to respect for private and family life’, but this
umbrella term gives shade to a very wide gamut of human rights and
concerns, of which the right not to know might be one deserving of
fuller – and more independently conceptualised – recognition.
The decision whether or not to recognise a ‘right’ not to know is ultim-
ately a value preference. But it is important here, in light of the above
analysis, to take into account the undoubted connection between the
concepts of privacy and autonomy, and our commitment to them and
to their protection. Each is concerned with core human interests, often
given effect through law and in the form of rights. The triumph of auton-
omy has been questioned above not because autonomy is not import-
ant, but because autonomy cannot do all of the work in protecting all
possible human interests. Moreover, and despite the above analysis, it is
important to recognise that autonomy does have a role to play in protect-
ing certain forms of the claim not to know, namely, when it is possible
(and meaningful) to express a prior wish. This is no different to advance
decisions about treatment. What the above account suggests, however, is
that individuals might have an interest in not knowing when they do not
know that there is something to know, and that in such circumstances it
would be a mistake to suggest that this interest can be given effect by an
appeal to autonomy alone. Privacy is a more coherent construct in such
cases. And, the connection between autonomy and privacy here is this:
if we are willing to accept that individuals have a right to know and a
limited set of interests not to know through prior wishes – all as aspects
of autonomy – does our commitment to the protection and promotion
of fundamental and common human interests not also commit us to
recognition of the privacy interest in not knowing?

Protecting privacy in law

The preceding argument suggests that autonomy and privacy must work
together if we wish to give full and proper effect to claims cast as the right
to know and the right not to know information about ourselves. The tri-
umph of autonomy in the medico-legal sphere has irmly committed legal
 Privacy and the right not to know: a plea for conceptual clarity 43

systems to protection of a patient’s right to know and, increasingly, rec-

ognition of, and protection of, advance decisions with respect to future
interventions on their behalf. Thus, for example, in England and Wales
ss. 24–26 of the Mental Capacity Act 2005 give formal statutory effect
to advance refusals of treatment. While these provisions do not extend
explicitly to advance refusals of information, the principled commitment
to such exercises of autonomy would be entirely in keeping with the spirit
of the law. Furthermore, the international examples given above of the
Oviedo Convention and the UNESCO Declaration attempts to embody
the right not to know can now be seen as particular forms of the commit-
ment to individual autonomy.
This author is unaware, however, of any legal system that has imposed
legal rights not to know as an aspect of privacy protection. This is a fur-
ther reason to support conceptual clarity around the putative rights
that are the subject of this book. In law, any claim to a right must be
supported by an appropriate remedy; and remedies are different for
different rights. Moreover, the nature and scope of a given remedy is
concerned with recognition of the particular kind of legal harm that
has been caused, the objective being to return the claimant as far as
possible to the position prior to the wrongful act – or if this is not pos-
sible – to provide monetary compensation to relect the degree of harm
caused. In addition, an exceptionally useful remedy is prior restraint in
the form of injunctive relief. This involves court-ordered prohibition
against certain behaviour deemed to constitute a wrong if carried out,
and for which an individual can petition a court. Finally, the role of
the declarator is of particular importance in the medico-legal sphere
because often the law is silent or unclear as to whether a particular
course of action is lawful or permissible. It is possible, therefore, to
petition a court for a declarator of legality in advance of any conduct
for a determination in this regard.
A moment’s thought will reveal that this does not leave an individ-
ual with many options if she or he is concerned with an interest in not
knowing. While damages might be payable once disclosure is made, this
is predicated on inding an appropriate remedy to plead. Injunctions and
declarators are both anticipatory orders – prior to any wrongful con-
duct – but they clearly require knowledge of what might occur. The indi-
vidual who is in a genuine state of ignorance about his or her own health
status clearly cannot beneit from either of these. Damages for ex post dis-
closure harm would be the only viable option. Health care professionals
facing the dilemma of disclosure are in a slightly better position in that
they could petition a court for a declarator of legality on whether or not it
is prudent and lawful to proceed to disclose. But this, again, would only
44 Graeme Laurie

be competent if it were accepted that a legal right was at stake, and that
a legal wrong might be committed.
This brings us to consider whether and how existing legal protections
of privacy might be played in aid of the recognition of the right not to
know. There are four options in the European context and for a country
with a Common Law tradition:
1. the common law action of breach of conidence;
2. the European provisions that promote data protection;
3. the common law action of negligence;
4. the European Convention on Human Rights.

Breach of conidence
The duty of medical conidence has been called a ‘cornerstone’ of med-
ical ethics (Ngwena and Chadwick, 1993) and it enjoys widespread
support as a matter of professional principle and legal duty. Indeed, in
the jurisdictions of the United Kingdom the common law duty of con-
idence was the closest that citizens came to direct protection of their
privacy before the passing of the Human Rights Act 1998. However,
conidentiality and privacy protection are not synonymous. The latter is
a far wider concept, as demonstrated by the Article 8(1) ECHR juris-
prudence on the meaning of ‘private life’,5 while in its origins the duty
of conidence required a pre-existing ‘conidential relationship’, such
as that between priest/penitent, lawyer/client, or doctor/patient. Absent
such a relationship, the UK courts were historically reluctant to recog-
nise that information per se could have the ‘necessary quality of coni-
dence’.6 This, however, has changed over the years to become a situation
where manifestly conidential information – i.e. assessed on an objective
analysis and by reference to the reasonable man – can be the basis of
a duty of conidence. Yet further shifts have occurred since the Human
Rights Act 1998, whereby Article 8(1) can be relied upon by claim-
ants to argue that they had a ‘reasonable expectation of conidental-
ity’7 with respect to their private information. But, none of these legal
shifts changes the fundamental limitation of the common law action
of breach of conidence with respect to the right not to know. This is
linked to its origins in protecting the conidential relationship and its

5
See, for example, the discussion of the scope of private life in Pretty, n. 2 above.
6
cf. Attorney General v. Guardian Newspapers Ltd (No 2) [1990] AC 109, [1988] 3 All
ER 545.
7
Campbell v. Mirror Group Newspapers Ltd [2004] 2 AC 457, [2004] 2 All ER 995.
 Privacy and the right not to know: a plea for conceptual clarity 45

central concern to keep information conidential within the relationship.

In other words, a breach of duty of conidence only occurs when infor-
mation is disclosed outside the relationship to a third party in the public
domain. The concern in our scenario is precisely the opposite: the dis-
closure dilemma is within the relationship itself – between health-care
professional and patient. There is no third party and no release of infor-
mation into the public domain. The legal construct does not permit a
remedy in such cases.

Data protection
The Data Protection Act 1998 implemented a 1995 EC Directive
(European Directive 95/46/EC) to advance two equally important object-
ives within the European Union: (i) the adequate protection of personal
data of citizens when this was processed for legitimate purposes, and
(ii) the promotion of the free low of information in the European single
market. Key features of the law are that it protects the privacy rights of
individuals in respect of the processing of their ‘personal data’, deined
in Article 2 of the Directive as ‘any information relating to an identiied
or identiiable natural person; an identiiable person is one who can be
identiied, directly or indirectly, in particular by reference to an identii-
cation number or to one or more factors speciic to his physical, physio-
logical, mental, economic, cultural or social identity’. This is regulated
by reference to eight principles that ensure, inter alia, that data are only
processed when it is fair and lawful to do so, that data are processed
and kept only so far as is necessary for the purposes for which they were
obtained, that the data are accurate and kept up to date, and that they
should not be transferred to any jurisdiction where there are inadequate
data protection provisions. ‘Processing’ of data enjoys a very wide inter-
pretation, including:
any operation or set of operations which is performed upon personal data,
whether or not by automatic means, such as collection, recording, organization,
storage, adaptation or alteration, retrieval, consultation, use, disclosure by trans-
mission, dissemination or otherwise making available, alignment or combination,
blocking, erasure or destruction.
(European Directive 95/46/EC, Art 2(b))

For present purposes, this can be taken to cover any use or disclosure of
personal data, in any direction and for any purpose. As such, it has far
wider regulatory capture than the common law duty of conidence. But,
would disclosure of personal data to an individual themselves provide a
legal remedy? On the helpful side, the legitimate purposes of processing of
46 Graeme Laurie

sensitive health data do not require individual consent (Data Protection

Act 1998, Schedules 2 and 3). This is but one of a range of legitimate
purposes, and another is the vital interests of the patient himself. But
this, of course, is to protect the health-care professional rather than the
patient. As for explicit remedies, the construct of the legislation is rather
less helpful. Section 10 of the Data Protection Act 1998 provides a right
‘to prevent processing likely to cause damage or distress’, and the pro-
vision is silent as to the nature of that processing, i.e. it need simply be
caught by the above deinition. There is no explicit requirement that pro-
cessing be to third parties, for example. Furthermore, the claimant need
only show that:
(a) the processing of those data or their processing for that pur-
pose or in that manner is causing or is likely to cause substan-
tial damage or substantial distress to him or to another, and
(b) that damage or distress is or would be unwarranted.
(Data Protection Act 1998, s. 10(1))

While the injunctive route would not be open for reasons already given,
these provisions might be helpful to a claimant so long as they could
show that the disclosure to them met the threshold of ‘substantial dis-
tress’. While no case has yet been brought, a possible hurdle here relates
to the origins of the Directive itself and the explicit objective to promote
the free low of data. A court would have to be persuaded of the import-
ance of the privacy interests at stake – as articulated herein – before it
would accept the kind of interpretation of the remedy offered above.

Negligence
To return to the common law, and moving beyond the realm of remedies
that are explicitly concerned with privacy protection, it is important to
consider the action of negligence and to ask whether the scope of a pro-
fessional duty of care might encompass a duty not to disclose. Space does
not permit a rehearsal of the well-known elements of a successful neg-
ligence action,8 but in circumstances where a disclosure dilemma arises
within a doctor/patient relationship then the question of the existence of
a duty of care simply does not arise. There is clearly a duty of care. The
issue is whether or not the standard of care extends to non-disclosure in
certain circumstances, and whether a failure to respect this – i.e. to dis-
close, would amount to a legally recognised harm.

8
For which, see Mason and Laurie (2013, chapter 5).
 Privacy and the right not to know: a plea for conceptual clarity 47

This kind of scenario is not new in discussions about professional

duties of care. Long before the triumph of autonomy – largely brought
about through successful negligence action by patients arguing an entitle-
ment to information – there was much discussion (and some judicial
recognition) of the so-called ‘therapeutic privilege’. Thus, in the imme-
diate post-war period of the 1940s, we have commentaries in the United
States such as this from Smith:
There are two main situations in which it is justiied to withhold the truth from
a patient … if the physician has compelling evidence that disclosure will cause
real and predictable harm, truthful disclosure may be withheld. Examples might
include disclosure that would make a depressed patient actively suicidal. This
judgment, often referred to as the ‘therapeutic privilege,’ is important but also
subject to abuse. Hence it is important to invoke this only in those instances
when the harm seems very likely, not merely hypothetical. The second circum-
stance is if the patient him- or herself states an informed preference not to be
told the truth. Some patients might ask that the physician instead consult family
members, for instance. In these cases, it is critical that the patient give thought
to the implications of abdicating their role in decision making. If they chose to
make an informed decision not to be informed, however, this preference should
be respected.
(Smith 1945–47: 349)

This quote embodies both autonomy-based and privacy-based reasons

not to disclose information to a patient. It will probably also provoke
a reaction in the reader as to the manifest paternalism of its tone. It
is certainly undeniable that a decision not to disclose information to a
patient – for fear that it will do them more harm than good – is a pater-
nalistic act. But, it is often overlooked that the act of disclosure in the
belief that it will do more good than harm is also paternalistic. What
comes to be known cannot then be unknown. And, if the above analysis
about the limits of autonomy is accepted, it is not a credible justiication
to claim that disclosure facilitates autonomy; at least, not if the concern
is with unwarranted intrusions of privacy.
Would a patient nevertheless have a remedy in negligence for an
unwarranted disclosure? There would be two key considerations to take
into account here in the contemporary context. First, and to return to
a UK-focused perspective, the courts are likely to take their steer from
practices accepted as proper by a responsible body of medical opinion.9
In this regard, the guidance from the General Medical Council might
hold considerable sway. The latest version (2013) of Good Medical
Practice is illustrative in this regard:
9
See Bolam v. Friern Hospital Management Committee [1957] 2 All ER 118, [1957] 1 WLR
582 and Bolitho v. Hackney Health Authority [1998] AC 232, [1997] 4 All ER 771, HL.
48 Graeme Laurie

49. You must work in partnership with patients, sharing with them the informa-
tion they will need to make decisions about their care, including:
a. their condition, its likely progression and the options for treatment,
including associated risks and uncertainties
b. the progress of their care, and your role and responsibilities in the team
c. who is responsible for each aspect of patient care, and how information is
shared within teams and among those who will be providing their care
d. any other information patients need if they are asked to agree to be
involved in teaching or research.
(General Medical Council 2013, para. 49)

The notion of ‘partnership’ is of crucial importance here. It suggests the

need to establish and build relationships that will reveal patient pref-
erences, expectations and tolerances of information lows. The general
tenor of this guidance tends towards disclosure, but discretion is also a
clear element of effective professional communication.
Finally, if a patient were aggrieved by an unwarranted disclosure,
would this yield a successful negligence action? This would require not
only that a court be satisied that disclosure amounted to a breach of the
requisite standard of care, but also that the patient was caused recog-
nised legal harm as a result. In the context of privacy-based claims this
would have to be psychological harm, and it is well established in tort
that this must reach the level of psychiatric injury. Mere upset would not
be enough.10 This suggests that there would be a very real practical bar-
rier to legal remedy in such cases.

Human rights
As a inal consideration, we must examine the contemporary human
rights paradigm. It has already been argued that to conceive of the right
to know and the right not to know as aspects both of autonomy and
of privacy can be caught by the very wide human right protection pro-
vided by Article 8(1) ECHR: the right to respect for private and family
life. The decision in Pretty v. UK conirmed the expansive nature of this
Article, extending it to autonomy claims. Just as importantly, however,
the European Court in that decision accepted the state argument that it
could legitimately interfere with the citizen’s rights by relying on Article
8(2), which provides:
There shall be no interference by a public authority with the exercise of this right
except such as is in accordance with the law and is necessary in a democratic

10
Note too, however, that in data protection law the threshold level is ‘substantial distress’,
see s. 10, Data Protection Act 1998.
 Privacy and the right not to know: a plea for conceptual clarity 49

society in the interests of national security, public safety or the economic well-
being of the country, for the prevention of disorder or crime, for the protection of
health or morals, or for the protection of the rights and freedoms of others.

This would need to be considered in any legal claim to protect a right not
to know. Thus, even if it were accepted that a privacy right were engaged,
disclosure could be justiied if it were shown to be a necessary and pro-
portionate response to the dilemma that was faced, and even if this were
upsetting to the individual involved.
This example also reveals a universal (legal) truth about privacy pro-
tection. In no legal system are privacy rights absolute. While the legal
parameters for what counts as ‘good cause’ vary from jurisdiction to jur-
isdiction, this is nonetheless important because it suggests that health-
care professionals and others who face a disclosure dilemma and who
are able to demonstrate sound reasons and processes for choosing to
disclose are unlikely to be the subject of successful legal action.
There might in fact be a range of clinical reasons to justify stepping
into the private sphere with knowledge about a person’s own health or at
least that will help in the assessment of where any tipping point might lie
in favour of (non)-disclosure. These are likely to include:
• the availability of a cure or effective intervention;
• the severity of the condition and likelihood of onset;
• the nature of the health condition itself, genetic or otherwise;
• the nature of any further testing or intervention that might be
required;
• the nature of the information to be disclosed;
• the nature of the request (e.g., testing for an individual’s health or for
diagnostic purposes for a relative);
• the question of whether and how far disclosure can further a legitimate
public interest, which can include familial interests;
• and the question of how the individual might react if offered unsoli-
cited information (e.g., whether any advance decision has been made
and is applicable in the circumstances).11
The above framework provides one possible approach to defend against
any legal action.

Conclusion
This chapter challenges the central role that autonomy has come to
play in the medico-legal sphere by arguing that claims to know or not
11
Discussed further in Mason and Laurie (2013, chapter 7).
50 Graeme Laurie

to know information cannot all be accommodated within this paradigm.

Respect for personal autonomy is about recognising capacity for self-
determination and respecting choices. But we do not and cannot control
all aspects of our lives, as perfectly illustrated by the example of unsoli-
cited approaches with information about ourselves. If this information is
given, then something is irrevocably changed. Disclosure here generates
a genuine dilemma for those in possession of the information. Any deci-
sion to approach or not approach the subject is a morally and socially
signiicant act. This is so because it is an entry into our private space. To
be in a state of privacy – a genuine state of separateness from others – is
also to enjoy psychological separateness from others. The conceptual-
isation offered in this chapter allows us to understand more clearly what
is at stake, and also to examine more deeply whether and how legal
protection might be forthcoming. In the inal analysis, and true to the
nature of the decisions being ethical in nature, the role of the law here
should be approached with caution. Professional discretion, rather than
legally imposed duty, is likely to be the optimal way to navigate this
particular maze.

References
Cannelopoulou Bottis, M. 2000. ‘Comment on a view favouring ignorance of
genetic information: conidentiality, autonomy, beneicence, and the right
not to know’, European Journal of Health Law 7: 173–83.
European Directive 95/46/EC on the Protection of Individuals with Regard to
the Processing of Personal Data and on the Free Movement of Such Data,
1995.
Foster, C. 2009. Choosing Life, Choosing Death: The tyranny of autonomy in medical
ethics and law. Oxford: Hart Publishing.
General Medical Council 2013. Good Medical Practice. Available at: www.gmc-
uk.org/guidance/good_medical_practice.asp (accessed 31 March, 2014).
Husted, J. 1997. ‘Autonomy and the right not to know’, in R. Chadwick, M.
Levitt and D. Shickle (eds.) The Right to Know and the Right Not to Know.
Aldershot: Ashgate Publishing, reprinted in this volume as Chapter 2.
Laurie, G. 1999. ‘In defence of ignorance: genetic information and the right not
to know’, European Journal of Health Law 6: 119–32.
Laurie, G. 2002. Genetic Privacy: A challenge to medico-legal norms. Cambridge
University Press.
Mason, J. K. and Laurie, G. T. 2013. Law and Medical Ethics. Oxford University
Press.
McLean, S. A. M. 1989. A Patient’s Right to Know. Aldershot: Dartmouth
Publishing.
Ngwena, C. and Chadwick, R. 1993. ‘Genetic diagnostic information and
the duty of conidentiality: ethics and law’, Medical Law International 1:
73–95.
 Privacy and the right not to know: a plea for conceptual clarity 51

Parent, W. 1983. ‘Privacy, morality and the law’, Philosophy and Public Affairs 12:
269–88.
Smith, H. W. 1945–47 ‘Therapeutic privilege to withhold speciic diagno-
sis from patient sick with serious or fatal illness’, Tennessee Law Review
19: 349.
Wertz, D. C. and Fletcher, J. C. 1991. ‘Privacy and disclosure in medical genetics
in an ethics of care’, Bioethics 5(3): 212–32.
Part II

Issues in genetics
4 Biobanks and feedback

Kadri Simm

‘Genes now tell doctors secrets they can’t utter’ was the dramatic title of
the New York Times article from August 2012 that described the problem
of incidental indings in genetic research. Indeed, the issue of whether
or not to disclose signiicant genetic information to participants of
research that generally do not expect it, is a much-discussed topic in
medical ethics and genetic journals and has now spilled over into gen-
eral media. The right to know or not to know discussion in relation
to biobank research is now almost entirely dominated by the so-called
‘incidentalome’ debate. Incidental indings are a well-known phenom-
enon in clinical care where, for example, a radiologist might ind some-
thing unexpected from an image in addition to the information she was
looking for. Genetic research, which is often based on biobank collec-
tions, is now similarly faced with such indings when researchers stum-
ble upon DNA information that, while not the aim of the research itself,
might be potentially very relevant to the donors. But while it might have
been relatively straightforward for the radiologist to contact the patient
or patient’s physician regarding incidental inds, the matter is much
more complicated for researchers far removed (both institutionally and
geographically) from the biological owners of the mostly anonymized
samples.
The possibility of disclosing unplanned, unexpected and yet import-
ant genetic information to biobank donors raises numerous scientiic,
ethical, legal and practical issues. Leaving aside the legal aspects, this
chapter gives an overview of these challenges and situates the debate
within a larger, long-anticipated phenomenon of personalized medicine.
I will start by looking back at the debates we had ten to ifteen years ago
in relation to biobanks and potential feedback and will then proceed to
discuss the recent arguments regarding feedback in the context of popu-
lation biobanks and other large-scale genomic research.

55
56 Kadri Simm

Looking back – the debates from the dawn of biobanking

The so-called ELSA aspects of genetic research and the establishment and
governance of biobanks, especially population biobanks, were amongst the
most debated issues on the bioethics and medical ethics pages ten to if-
teen years ago. Population biobanks are large collections of biological sam-
ples that often also include medical data and records, lifestyle information
and other data linked to the genetic sample. Lots was expected of genetic
research. Genetic information was simultaneously perceived as promising
(of improved health) and threatening (to our identities and futures). Some
of the more speciic topics concerned informed consent (and its alterna-
tives for biobank research like broad consent or open consent), privacy
(and how biobanks might threaten this), commercialization (can genes be
patented or are they truly human heritage?), insurance (how genetic infor-
mation might jeopardize its affordability) as well as unease about the hype
and deterministic outlook of much of genetics-based speculation.
Right to know and not to know debates were linked to questions about
autonomy, choice and responsibility. There was anticipation of personal-
ized medicine, where drugs and clinical care would be tailored according
to patients’ DNA. But there was little discussion of the possibility of inci-
dentalome. While the prospect of a greatly heightened need for genetic
counselling was indeed envisioned, it was mostly linked to clinical care,
not research.
Questions regarding the right to know or not to know can be raised on
several levels – the individual, the familial and the social – and these have
remained relevant in the context of incidental indings and biobank feed-
back. The public health perspective that was perhaps the most underrep-
resented at the start of the so-called genetic revolution has also stressed
the right of societies to know – whether it is for public health planning
purposes or as a duty to promote scientiic freedom. Largely epidemio-
logical in nature, it would rely on anonymized samples.
Whereas the various dilemmas of returning unexpected information to
patients were certainly considered, these mostly pertained to genetic test-
ing and screening taking place within clinical care or direct-to-consumer
testing. The likelihood of disclosing information to research participants,
especially on the scale of population biobanks, was to become an issue
only later.

Why has feedback become such a hot topic?

Increased non-proit research capacities, including cheaper and faster
genome sequencing technologies as well as the linking up of biobanks
 Biobanks and feedback 57

into global research networks, have resulted in researchers stumbling

upon genetic indings that they might or might not have been looking
for. Some of these indings are likely to have important consequences
for health, treatment or reproductive decisions of donors. This informa-
tion can be life-saving or at least gravely affect quality of life. However,
in research settings researchers are mostly working with anonymized
samples and most donors have signed consent forms stating that they
will not be contacted. And thus researchers and the institutions involved
are faced with an age-old moral dilemma: what is the right thing to do?
And who should do it? Francis Collins, Director of the NIH, has called
this ‘one of the thorniest current challenges in clinical research’ (Kolata
2012).
This ‘thorny challenge’ has numerous causes. Firstly, genetic research,
especially of the kind based on biobanks or other collections, has become
much more commonplace. Clinical genetics or incorporation of genetic
information into routine medical care has become if not yet an every-
day reality, then a more common practice. Genetic information about
oneself is more readily available and is sometimes being quite publicly
shared along with other medical information. Contrary to the worries
about their privacy being threatened by potential leakages of genetic and
medical information, many choose to go public with that data them-
selves. A website (patientslikeme.com) offers a virtual meeting ground
for patients with similar diagnoses and people are willing to identify
themselves personally on those sites through their Facebook account or
similar. Another site – Quantiied Self – offers the possibility of sharing
various self-tracking data (including genetic information) with others
and has actual meeting groups in over eighty cities across the world.
Genetic information in those sites has usually originated from direct-
to-consumer testing or clinical care. The personal genomics industry
has latched onto the genetic testing wagon and its activities and engage-
ments are often pushing public authorities to scramble for new policies
(Wallace and Kent 2011).
Secondly, the feedback challenge relates to the way in which most
biobanks were set up. Biobanks themselves are and always were a com-
plex and varied group with many dissimilarities. Yet, over the past
decades the complexities have increased. Besides the more traditional
categories of national, commercial and the various public–private part-
nership models, or the disease-speciic, population-speciic large-scale
population biobanks, there are whole new combinations. Biobanks are
increasingly also globally networked and their governance is therefore
a legally and ethically complicated affair. Pooling biobank data has
been seen as crucial for breakthroughs on common complex diseases
58 Kadri Simm

and recently global alliances have being established to start working

towards a common framework for sharing genomic data and clinical
information.
Approximately ten to ifteen years ago most new biobanks saw altru-
ism and the beneits of the future generations as appropriate motivational
mechanisms for collecting data. The personal beneit of participating in
a biobank was largely limited to some testing at the initial joining (for
example, taking blood pressure). The good old gift relationship was largely
hoped to be applicable still, even though criticisms about its appropriate-
ness in the context of commercial or public–private biomedical research
arrangements had already been raised (Tutton 2002). A few biobanks
promising donors general access to their genetic information and coun-
selling (like the Estonian Genome Center) were chastized for going along
with the neoliberal focus on private gains at the expense of solidaristic
and selless donations for the beneit of humankind. Thinking at the time
is exempliied by the US National Bioethics Advisory Committee guide-
lines from 1999 on Research Involving Human Biological Materials. While
they suggested that the issue of disclosure of results should already be
addressed in research plans, they were also of the opinion that report-
ing results back should be limited and disclosure should be exceptional
(National Bioethics Advisory Committee 1999: 72). Disclosing individ-
ual indings would also ‘place the researcher in an inappropriate clinical
relationship with research participants’ (Samet and Bailey 1997: 207).
Furthermore, most donors signed informed consent forms agreeing
that they would not receive any (personal) information back from the
biobank. For example, the UK biobank consent form states that the
undersigned agrees to the following: ‘I understand that none of my results
will be given to me (except for some measurements during this visit) and
that I will not beneit inancially from taking part (e.g., if research leads
to commercial development of a new treatment)’ (UK Biobank consent
form, available online).
Thus for large-scale population biobanks the norm at the time was
to rely on the altruistic public health model. In contrast, the Estonian
Genome Center’s consent form states both that:
• I have the right to be aware of my genetic data and other data about
me stored in the Gene Bank, except my genealogy. I have the right to
genetic counseling upon accessing my data stored in the Gene Bank. I
can access my data stored in the Gene Bank free of charge, and that
• I have the right not to be aware of my genetic data, hereditary charac-
teristic and genetic risks obtained as a result of genetic research.
(Estonian Genome Center, available online)
 Biobanks and feedback 59

The Estonian case (and a few others) aside, feedback, if any, would be
provided in most general terms (for example, online publication of gen-
eral research results). Would people have signed different consent forms,
ones that promised feedback? Sociological data suggests that quite likely
they would (although we cannot infer anything normative from this). Of
the potential participants of the Estonian biobank, 83 per cent wanted
to get the promised personal ‘gene card’ (Sutrop and Simm 2004). More
recently a strong majority has wanted disclosure of both general and
individual research results (Bovenberg et al. 2009).
Most biobanks had no mechanisms in place for disclosing informa-
tion to donors and a recent study of eighty-ive biobanks concluded that
the issue of return of results was not addressed in their public docu-
ments (Johnson et al. 2012). Since the incidentalome has become more
prominent many biobanks and research programmes have started to ask
donors whether they would like to have feedback and what kind of feed-
back they would like. But all of this has come too late for biobanks and
research collections that were set up without explicit disclosure policies.
The incidentalome looks to be the initiation rite into the era of personal-
ized medicine – and while the latter was much talked about it was appar-
ently still not expected to actually arrive so soon. The arguments against
disclosure that I will turn to now can perhaps provide some insights into
why biobanks were reluctant to promise personal feedback.

Arguments against feedback

The duty to disclose relevant results to participants of clinical research
involving genetic information has been well established in numerous
international documents (Knoppers et al. 2006). Things are more com-
plicated with biobanking. If feedback concerns signiicant health-related
information then few would dispute that there is a moral duty to dis-
close information. Researchers tend to agree that sharing information
with donors is justiied in cases of preventable or treatable diseases
(Meulenkamp et al. 2012). Any of the numerous principles that have
been evoked in these debates – whether it is avoidance of harm, duty of
beneicence or respect for autonomy – would grant that. But that still
leaves open the question of whose duty this is and what are its limits.
Potential duty to disclose health-related information has traditionally
been located within the domain of medical doctors. One of the strongest
arguments against providing personal feedback relies on the tradition
of separating the domains of clinical care and research. These domains
have had different objectives, care focusing on the individual’s needs and
beneits, research aiming to generate new knowledge for the beneits of
60 Kadri Simm

future generations or at least populations more widely. Because of those

differences these domains have also been governed by distinct ethical
principles – beneicence and avoidance of harm relevant for clinical care,
creation of new knowledge and public health values for research. Thus,
the argument goes, it would be unnecessary and in breach of principles
governing research to start providing personal feedback. Furthermore,
such activities would lead to the strengthening of therapeutic miscon-
ception: a mistaken perception of the research participants that they are
being cured and cared for.
Duties of beneicence and non-maleicence traditionally characterize
clinical care. The principle of respect for autonomy is more dificult to
categorize and could arguably be relevant for researchers as well – in this
case weakening the delineation of the two spheres. But since the duty of
feedback can be thought quite demanding on researchers, it is likely to
be considered supererogatory.
Argument for the maintenance of trust is one that can be played both
ways. For many biobanks feedback would be contradictory to what was
promised and any breach of initial agreement could affect trust nega-
tively. On the other hand, public awareness of researchers holding on to
information that can greatly beneit donors can also lead to a loss of trust
towards the biobank and its governance framework.
Besides ethical arguments, potential feedback also presents scientiic
challenges. Quality of research indings can be problematic as a lot of the
information uncovered is of indeterminate and possibly unreliable clinical
signiicance. Much of biobank research is done by secondary research-
ers on anonymized samples in different countries and the biobank itself
tends not to control the quality of the research (Bledsoe et al. 2012). In
the USA, laboratories need to be certiied to provide clinically relevant
data but there are many research laboratories without this certiication.
Therefore the clinical relevance of a laboratory inding still needs to be
determined (Hansson 2012). Genetic information is complex and con-
tinuing research is likely to increase, not decrease this complexity.1 Yet it
is also worrying that with the ‘hype’ around genetic information continu-
ing, considerations of environmental and socio-economic determinants
of health might be overshadowed by tendencies towards the logic of gen-
etic determinism.
Finally, there are a number of practical issues: providing individual
feedback of research results can be very expensive and it is uncertain
who is responsible for the cost. Although the use of IT can help to lower

1
Tim Spector estimated that 90 per cent of the research articles published at the height of
the hype in the 1990s turned out to be wrong (McKie 2013).
 Biobanks and feedback 61

the costs, if professional genetic counselling is included, this is bound to

be costly. Also, the cumbersome duty to give feedback might be a disin-
centive for the establishment of new biobanks (Bledsoe et al. 2012). And
let’s not forget about the potential psychological burdens that disclosure
may create – for genetic conditions numerous generations of a family
might have to undergo a ‘lifetime of medical surveillance’ that might or
might not have actual health-related results (Rothstein 2013: 65).

Arguments for disclosure

Traditional ethical principles of health care igure prominently in the
pro-disclosure arguments. But for their relevance in biobank research
the strict clinical ethics/research ethics differentiation needs to be decon-
structed. This might not be so dificult, especially for newer biobanks.
For example, in novel participant-centred initiatives relying on large
international biobank consortia the regular contact and communica-
tion between participants and researchers is already central (Kaye et al.
2013). Participants can choose to support certain research projects,
manage their consent and decide what sort of feedback they would like
to have (or not).
Indeed I would argue that the entire issue of biobank feedback is an
illustration of an entirely new social, political and scientiic trend. The
conventional roles and responsibilities of medical care and research
vis-à-vis the patient and the public at large are undergoing change as
the need for democratizing research and better science governance is
emphasized. Policy initiatives (for example, from the EU) provide sup-
port for participatory science, for transparency and for engagement with
the public and stakeholders throughout the research cycle from set-
ting research priorities and making funding decisions to implementing
research results. Novel ethical frameworks have been proposed to deal
with the breaking down of the research/care delineation and the need to
openly embrace mutual learning as part of the clinical practice (Faden
et al. 2013). Medical innovation is increasingly happening in clinical set-
tings. The reciprocity embedded in disclosure policies is a necessary part
of any such participatory medicine.
The care/research differentiation is also challenged through changes
in clinical care. Medical professionals have always stressed the import-
ance of prevention in health care and genetics is likely now to offer
an evidence-based way of doing exactly that as genetic informa-
tion becomes a more routine part of care. It has been suggested that
researchers already have a duty to actively look for mutations in all
samples (Green et al. 2013) or that this is likely to be a future obligation
62 Kadri Simm

(Gliwa and Berkman 2013). If the train of personalized medicine is ever

to truly leave the station, the overlapping of medical care and research
must intensify.
Although it is true that the aims of research differ from those of clinical
care, this does not necessarily mean that both objectives cannot be sim-
ultaneously enacted. People can participate in research while also poten-
tially beneiting from personal feedback. Therapeutic misconception is
problematic in clinical trials where the patient, instead of beneiting from
treatment, might actually be harmed (e.g., by being in the placebo arm
of a successful trial). In genetic research therapeutic misconception is
problematic because personal care is simply neglected, not because it is
somehow impossible to provide it. There is no logical inconsistency in
striving to do both, although it might clearly be more costly.
If the care/research differentiation is not as solid as it perhaps used
to be, we can proceed to discuss the ethical principles of health care
that have been considered relevant in feedback debates. Health care is
a value- and principle-laden ield. We know of the principles of biomed-
ical ethics (beneicence, non-maleicence, autonomy and justice) with or
without their additions (the so-called European principles of solidarity,
reciprocity, precaution, etc.) as well as of the important values of public
health ethics (generalizable knowledge and beneits for future genera-
tions). What is obvious is that these values and principles can and do
conlict. Much has been written about the tensions between individual-
istic ethics of principlism and the more communitarian priorities in pub-
lic health ethics or even about the paradoxes of medical practice where
communicating a dificult diagnosis supports a patient’s autonomy while
it might simultaneously bring harm (principle of non-maleicence).
A public health perspective would favour an eficient and just use of
resources and might not support individual feedback. The most promin-
ent arguments for disclosure have been associated with the principles of
autonomy and beneicence. Disclosure of signiicant health-related infor-
mation is crucial for allowing a person to make autonomous, informed
decisions about his or her life. Duty of beneicence requires the promo-
tion of human well-being. Decisions regarding whether to give feedback
necessarily struggle with paternalism and autonomy.To respect autonomy
we need to avoid paternalism, yet, unless we are dealing with a biobank
that had detailed feedback procedures in place from the very start, deci-
sions to disclose genetic information or not necessarily involve pater-
nalistic decision-making regarding people’s genetic information. Duty of
beneicence and avoidance of harm seem straightforward but they might
have potentially paternalistic undertones, especially when avoidance of
harm is used as an argument against disclosure (Costain et al. 2012). Or
 Biobanks and feedback 63

alternatively, paternalistically we throw away people’s informed consent

and assume that everyone wants to know.
Both camps of the for and against disclosure are essentially juggling
with the same set of principles and values, just ranking them differently.
The most common route out of those conlicts usually points to the
necessity of contextual decision making as opposed to more absolutist
and universal resolutions. As these numerous conlicts show, we have a
pluralistic situation where multiple important and yet incommensurable
values exist side by side and weighing those values while sensitive to par-
ticular contexts is likely to produce well-justiied solutions. Nevertheless,
work towards normative guidelines in this area has also been ongoing for
years and has resulted in various proposals (Green et al. 2013; Wolf et al.
2012).

Proposals for regulating feedback

In many ways the challenges regarding potential feedback from clinical
care and research were known more than a decade ago (Schulte 2004).
The criteria of clinical validity and of clinical utility, the creation of pre-
symptomatic patients, the shared character of genetic information and
the challenges this entails to privacy and conidentiality were all dis-
cussed. Yet the information to be disclosed has become more complex
and the scale – the mere quantity of analysed DNA – has increased.
By now the debate has largely left behind the ‘if and whether’ stages
and has concentrated already on how to give feedback, what information
to return, when to do it and who should do it. There is no question any
more of whether there will be incidental indings but rather how many
and which ones to focus on (Abdul-Karim et al. 2013: 565). There is
relatively little general disagreement about the criteria that should char-
acterize information that ought to be disclosed. Analytic validity, clinical
validity, avoidance of signiicant harm (potentially life-saving), clinical
utility and actionability are some of the more widely shared standards
(Bredenoord et al. 2011; Wolf et al. 2012). But while the overall import-
ance of these criteria is not disputed, the speciic qualiications of each
remain uncertain. Clinical validity, for example, is not usually established
by researchers in laboratories but results from various long-term inves-
tigations and trials, ideally also peer-reviewed. Learning more and more
about genetics necessarily brings a realization that we know very little of
the ‘big picture’ – or as Socrates insisted a few thousand years ago – the
more we learn, the more we also learn how little we know. The threats
and the assurances of today’s genetic science and counselling can and
likely will be in a state of lux as research advances. We are already leaving
64 Kadri Simm

behind the comfortable plains of monogenetic conditions for the heart-

land of complex diseases. There are many helpful analyses and pragmatic
recommendations that attempt to create order in this tsunami of ques-
tions and concerns associated with feedback (Anastasova et al. 2013;
Berg et al. 2013; Bovenberg et al. 2009; Wolf et al. 2012).
One potential mismatch between disclosure recommendations and
empirical research on biobank participants’ preferences concerns action-
ability – whether it is possible clinically to treat or prevent a condition.
Researchers have tended to strongly support the position that genetic
mutations with unclear implications for health should not be disclosed
(in a Netherlands study 95 per cent support among geneticists) and only
treatable or preventable conditions should be disclosed (74 per cent sup-
port among the same group) (Bovenberg et al. 2009: 232).2 Thus, for
example, Huntington’s disease would not qualify for disclosure because
prevention is not possible (Chan et al. 2012). This is contentious, espe-
cially if one is to consult public opinion in this matter. In one study 60 per
cent of research biobank participants were willing to learn about even the
unclear implications (Bovenberg et al. 2009) and in another study over
80 per cent of participants in direct-to-consumer testing wanted to know
about unpreventable conditions (Bloss et al. 2010). Other research has
conirmed that knowledge itself can be deemed beneicial even without
the subsequent beneits towards health (Costain et al. 2012).
In this chapter I have considered mostly cases where we do not know
whether people would like to receive feedback. Most biobank partici-
pants signed consent forms stating that no feedback would be provided
but at the time this was the only option for participation; people did not
actually have a choice in these matters. There is a general tendency to
assume that people would want to know because this would allow them
to make better-informed decisions. The right not to know is, in some
sense, inherently problematic for the domain of health care since the lat-
ter is normative, prescriptive of health while the principle of autonomy as
an ethical ideal tries to be open and value-neutral as regards life choices.
Of course, philosophers recognize very few rights as absolute (if any), so
even a right not to know is conditional and in biobank research it seems
to be tied up with responsibilities for signiicant others – our children
and relatives – rather than with personal choices.
As genetic information is always shared, feedback will concern other
people besides the participants who will be directly involved. When and

2
Although, interestingly, in earlier studies of geneticists’ views they appeared to support
the position that information should be disclosed regardless of whether a condition is
treatable or not (Wertz and Fletcher 1989).
 Biobanks and feedback 65

how is this information to be shared? Passive disclosure has been advo-

cated as appropriate for relatives, meaning that they themselves ought
to ask for information (Chan et al. 2012). Yet the nature of ‘passivity’ in
that context has been questioned, especially since relatives are often not
aware of such data existing (Nijsingh 2012) and the original participant
might be deceased. While keeping important information from relatives
can contradict with a duty not to harm, non-disclosure of genetic infor-
mation to relatives cannot be construed as producing direct harm but
rather seen as a lesser offence of a failure to help (Powers 2002: 375).
An interesting subsection regarding the sharing of information concerns
pediatric collections where it has been suggested that parents do not have
a right not to know crucial, potentially life-saving, genetic information
about their children (Hens et al. 2011). If this were accepted it raises
questions about the special status of genetic information in a parental
relationship. Pediatric research might also produce results that are not
immediately relevant for the child but rather for her parents – for example,
the discovery of a BRCA gene (Abdul-Karim et al. 2013: 568).
Qualitative research has shown that sharing genetic information
among relatives is often based on a different logic or at least discourse
than the abstract, principle-laden debates of ethics and research com-
munities. The nature of the relationships between people seems to mat-
ter more than prospects for prevention and actionability (Gilbar 2007).
Substituting the concept of integrity instead of autonomy has opened
up the nuances of familial communication in these matters (Boddington
and Gregory 2008). Talk of rights can seem inappropriate in familial set-
tings where justice has less to do with rights-talk and more with notions
of care and need. We have to be careful to ensure that the conceptual
framework driving policy change in this area is responsive to the actual
needs and concerns of research participants.
While standard informed consent procedures are intended to provide
individual guaranteed rights to withdraw, people seem to have a broader
perspective. They ask policy questions, such as how biobank research is
going to beneit the health-care system or how the research priorities of
biobanks are to be decided (Levitt and Weldon 2005, Ursin et al. 2008).

Final thoughts
In conclusion, I believe that the expression ‘incidental indings’ increas-
ingly makes only limited sense in the context of biobank research, or
rather, it is only meaningful from the perspective of the researcher. For
a participant who has given broad consent for almost any type of bio-
medical research to be undertaken on her sample, any inding can be
66 Kadri Simm

considered incidental as participants usually do not have control over or

even knowledge of what research gets done – at most they might simply
be informed of ongoing research projects.
Perhaps surprisingly, studies with direct-to-consumer testing indi-
cate that the sharing of genetic test results with one’s GP might be
less common than expected (Darst et al. 2013), and very few take
advantage of the free genetic counselling that is offered (Bloss et al.
2011). This raises questions about the implications of genetic test-
ing for medical care. But, to speculate further, it could well be that
the incidentalome associated with research is likely to lessen over the
next decade as whole genome sequencing becomes cheaper and more
accessible as a routine part of medical care. Then the signiicant risks
are likely to be uncovered and discussed within a more traditional
doctor–patient relationship.3
I would also like to draw attention to a somewhat questionable prem-
ise to the entire feedback discussion, namely that people will act upon
the disclosed information – they will take better care of themselves and
ultimately their quality of life will be better. While this is an entirely rea-
sonable assumption to make, there are some hints that the picture might
be more complicated than that. For example, there is a surprising lack
of belief (among biobank researchers) that knowledge of genetic infor-
mation will motivate changes in lifestyle and a rather heightened sense
that it may harm them or their insurance prospects (Meulenkamp et al.
2012: 261). While research on the long-term effects of genetic informa-
tion on lifestyle choices and health is ongoing (e.g., the Scripps Genomic
Health Initiative, the Coriell personalized medicine collaborative) there
are some results from direct-to-consumer testing that demonstrate a lack
of behavioural change (Bloss et al. 2011: 532). As genetic information
deals with likelihoods and risks, disclosure of genetic information will
often simply conirm already known risks that are present in family his-
tory or associated with lifestyle. We all know that smoking and being
overweight affects our well-being and health and yet awareness of that
information has often not led to behavioural change. Why this is so is
beyond the aims of this chapter but these tendencies should be taken
seriously when we discuss the future of medicine, and especially that of
the personalized kind.

3
This, however, is only likely to be true for afluent countries and not for the vast major-
ity of the world population. Were the ancillary duties of researchers to be strengthened
towards biobank participants, then samples sourced from developing countries would
likely still require attention and care from researchers.
 Biobanks and feedback 67

Acknowledgements
I would like to thank Kristi Lõuk, Liis Leitsalu, Francesco Orsi, Alex
Davies and members of the departmental philosophy seminar at the
University of Tartu for useful comments. I also thank ISCH COST
Action on Bio-objects and their boundaries for inspiring discussions.

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5 Suspects, victims and others: producing
and sharing forensic genetic knowledge

Robin Williams and Matthias Wienroth

Introduction
This chapter examines several related non-medical contexts in which
genotyping is carried out and where questions arise over who has the
right to commission, deploy and share with whom the results of that
genotyping. There are three such contexts on which we focus attention.
The irst – and dominant one – is the application of genetic technologies
to biological material recovered from crime scenes, from the victims of
crime, from criminal suspects and from others for ‘elimination purposes’
in the course of criminal inquiries. The second is when genetic analysis is
carried out on bodies recovered at ‘mass disasters’ in an effort to identify
the dead. The third is the sampling and proiling of individuals involved
in paternity and maternity disputes, or in other circumstances where it is
deemed necessary to prove close genetic afiliation. We refer to all three
of them as ‘forensic’ on the grounds that the primary purpose of each
is to support legal process of various kinds, including the deliberations
of civil, coronial, local, national and international criminal courts. Each
genotyping knowledge context raises slightly different issues because
of variations in the identities of the persons from whom samples are
taken, the nature of the genetic information produced by preferred tech-
nologies, the primary purposes which its production serves and varying
expectations of how much of this information should be shared with
whom and under what circumstances.
A complicating factor is that close examination of some of these con-
texts suggests that the seemingly clear boundary between forensic genetic
applications and the use of genetic knowledge within clinical medicine
(or medical research) is often opaque in practice. This may be due to
genetic inquiries crossing contexts of use (e.g., medical issues might be
relevant for a criminal investigation or a paternity determination). It may
be because medical information and genetic information have to be used
in combination (e.g., to determine the robust identiication of bodies),
and it may also occur because some data generated by the application of

70
 Suspects, victims and others 71

particular genotyping methods are useful in both medical and non-med-

ical contexts (e.g., analysis of ancestral lineage is relevant for biomedical
research and for forensic identiication).
In addition, important supplementary questions about the produc-
tion, retention and dissemination of genetic knowledge are generated
in the course of police or judicial inquiries, over and above those found
in medical settings. Some arise from well-established considerations of
privacy and conidentiality, whilst others arise from considerations of
more recent claims concerning individuals’ ‘rights to be known’ and its
opposite, a ‘right to be forgotten’. This chapter will consider all of these
features, but before doing so will outline the varying forms of genetic
knowledge that are typically sought in the course of forensic inquiries,
the goals that such knowledge is intended to support, and the categor-
ies of people who may be subject to the application of forensic genetic
knowledge in practice.1

Forensic genetics: forms of knowledge and their

application
The historical trajectory of forensic genetics has already been described
in a number of texts (e.g., Hindmarsh and Prainsack 2010; Kaye 2010;
Lazer 2004; Lynch et al. 2008; Williams and Johnson 2008). One fea-
ture of this trajectory is especially signiicant for the current discussion:
its growing informativity. When irst introduced, forensic DNA proiles
were characterised appropriately as ‘empty signiiers’ (Pugliese 2010)
insofar as the information captured irst by Restriction Fragment Length
Polymorphisms and subsequently by Short Tandem Repeat (STR) multi-
plexes were chosen from what were understood to be non-coding regions
of the genome – so-called ‘extragenic DNA’. This assertion was – and in
part still is – heavily relied upon to defend the introduction or expansion
of criminal justice DNA proiling and databasing whenever critics of the
technology oppose it on the grounds of its risk to genetic privacy. Since
the allelic combinations that make up STR proiles provide no informa-
tion about functional genetic properties, then phenotypical or medical
knowledge of the person whose proile has been constructed cannot dir-
ectly be inferred from inspecting such proiles.2 Medical, employment

1
Most of this chapter’s observations on issues in forensic genetics will refer to recent
legislation and practice in England and Wales. However, from time to time we draw on
material from other civil and criminal jurisdictions to illustrate particular points.
2
Despite this fact, most court judgments relating to the sampling and proiling of DNA
in support of criminal investigations still treat DNA proiles as ‘sensitive personal infor-
mation’. Data protection authorities normally share the same view, although such
72 Robin Williams and Matthias Wienroth

and insurance agencies can learn nothing from an examination of the

content of such proiles about the person from whom such data were
derived, and it is dificult to think of any circumstances in which they
would want to have this content anyway.3 Nevertheless, and in line with
common precautionary approaches, in all jurisdictions in which forensic
DNA proiles are constructed from samples taken from individuals and
from crime scenes, legislation normally limits their uses to policing and
criminal justice purposes; knowledge of even these minimal details must
not be shared with other agencies, including those with civil authority in
paternity cases.4
The retention of samples following their successful proiling raises
a more signiicant threat to the privacy of the individuals from whom
such samples originated since their prospective informational content is
genetically exhaustive. For this reason, forensic genetic legislation tends
to strictly limit the control and uses of samples taken from suspects,
offenders and others. In some cases, samples may be retained for vary-
ing periods of time, but in almost all cases, there are signiicant restric-
tions on any analysis that can be carried out on them and strict rules
concerning their destruction. For example, the most recent UK legisla-
tion – the Protection of Freedoms Act 2012 – has radically reconigured
the previous retention regime in England and Wales by establishing dif-
ferent retention rules for DNA taken from convicted persons and that
taken from unconvicted persons. It also establishes different retention
periods for proiles taken from those convicted as adults and those con-
victed below the age of eighteen. Finally, it creates for the irst time in
this jurisdiction differences in the allowable retention period for those
arrested and charged with ‘qualifying offences’ (serious, violent or sex-
ual offences, terrorism and burglary offences) and those arrested and
charged with other offences.5
Anyone whose DNA sample has been taken and whose proile has been
constructed and retained following a criminal investigation in England
and Wales has the right to know their proile information (under the

authorities have powers only over the information derived from samples and not samples
themselves.
3
This is, of course, entirely separate from circumstances in which medically relevant bio-
logical samples or genetic information about individuals might be of interest to forensic
investigators. This could happen in criminal cases and in disaster victim identiication
and, along with other rare possibilities, does raise signiicant legal and ethical questions.
4
However, it is worth noting that the range of organisations that come under the heading
of ‘authorised police or criminal justice agency’ – and therefore have legitimate access to
these genetic data – can be quite great.
5
Full details of this legislation can be found at www.gov.uk/government/publications/pro-
tection-of-freedoms-act-2012-dna-and-ingerprint-provisions/protection-of-freedoms-
act-2012-how-dna-and-ingerprint-evidence-is-protected-in-law (accessed 3 June 2014).
 Suspects, victims and others 73

current SGM+™ proile system, consisting of their alleles at ten stand-

ardised loci), although it is not clear why they would want it or what use
they could make of it. The consequences of having such samples taken
and retained depend less on the nature of the genetic information in
the proile, but more on what is known (or believed) about the speciic
circumstances of sample collection, the uses that can be made of the
retained sample and the proile derived from it, and on what the fact of
databased proile retention is thought to connote about the individual.
Depending on the particular forensic DNA legislation in place, reten-
tion may signify only that the person sampled has, at least once, been
arrested on suspicion of involvement in a crime. In other jurisdictions
it may mean that the person sampled has been, at least once, charged
with a crime. Under still other regimes it will show that they have been
convicted of a crime. Each of these particulars – of growing ‘involvement’
in the criminal justice process – carries stigmatising connotations when
they become known to a range of agencies and other actors.
The identity consequences and practical signiicance of having one’s
DNA proile retained on a legally governed database can only properly
be determined once the full details of the regime in question are known.
In addition, the signiicance of this potentially stigmatising retention and
recording process varies according to the likelihood of others knowing this
fact about the individual whose DNA has been retained. In Goffman’s
(1968) terms, such a fact might be discreditable for the individual con-
cerned, but becomes discrediting only when known to others. For this, and
other related reasons, the establishment, expansion and uses of such foren-
sic DNA databases are the subject of constant deliberation in many juris-
dictions, and there are many differences between jurisdictions concerning
which categories of persons can be compulsorily sampled and proiled,
against what existing proiles these ‘subject’ proiles should be specula-
tively searched and whether, and for how long, subject proiles should be
retained on such databases. The situation globally is complex and diver-
gent. For example, in the UK and in some US states, DNA can be taken
from any arrested person; in France, DNA samples from persons not
charged or convicted can only be obtained voluntarily; and in Germany,
DNA material can only be taken from charged or convicted persons.
Political sensitivity to these complicated issues of privacy, identity
and stigma is often relected in the terms used to denote forensic DNA
databases. In the UK case, for example, the National DNA Database
(NDNAD) was originally designated as a database that would hold ‘the
active criminal population’ of England and Wales. It was then re-described,
following the legislative changes that permitted the retention of proiles
from the unconvicted, as a database of the ‘active suspect population’ of
74 Robin Williams and Matthias Wienroth

this jurisdiction, but even this modiied nomenclature was both inaccur-
ate and stigmatising. Not all proiles held on it were from criminal sus-
pects since anyone who was sampled as part of an intelligence-led mass
screening was asked if they would consent to the indeinite retention of
their samples and proiles. In addition, some people whose proiles had
been retained may have once been suspects, but subsequently cleared of
involvement in a crime.
Questions of knowledge production and sharing arising from the col-
lection, analysis and databasing of samples subjected to standardised
STR proiling have been supplemented by additional questions that arise
from more recent developments in forensic DNA analysis. Especially
important are those developments designed to increase the capacity of
investigators to infer information about an individual whose biological
material was collected from a crime scene where an STR proile has been
obtained from such material but has not matched a proile of a known
individual.
These developments variously promise the capacity to infer from gen-
etic analysis common but differentiated personal properties: of related-
ness to others (by ‘familial searching’), of features of visual appearance
(through the genetic underpinning of visible characteristics) or of ‘bio-
geographic origin’. Such promises remind us, of course, that foren-
sic genetics has always sought to distinguish itself from the assertions
of some other forensic ields to search for ‘discernible uniqueness’ by
instead always asserting the presence of ‘genotypes’, ‘haplotypes’ and
‘phenotypes’ (Amorim 2012) with known frequencies in which individ-
uals may be placed. Emerging innovations based on Single Nucleotide
Polymorphisms (SNPs), such as biogeographic Ancestry Informative
Markers (AIMs) and the genotyping of phenotypical information
(Externally Visible Characteristics, EVCs) have raised expectations that
in the near future forensic techniques can, with a convincing degree of
certainty, determine the population group origins of a human DNA sam-
ple as well as provide information on some of the physical attributes –
such as eye, hair and skin pigmentation; body and face morphology; and
age – of the person whose sample has been analysed. Already, some stud-
ies have reported a degree of progress that gives cause for optimism about
the capacity of such emergent technologies (e.g., Kayser and Schneider
2009; Ruiz et al. 2013; Spichenok et al. 2011; Walsh et al. 2011).
The use of these technologies represents a clear departure from
earlier responses to privacy critics that forensic genetics only uses so-
called ‘non-coding’ parts of the genome that do not hold any signiicant
information about the individual and his or her relatives. Some (e.g.,
M’charek, Toom and Prainsack 2012; Toom 2012) have described this
 Suspects, victims and others 75

as a signiicant extension of jurisdictional intrusion into bodies and the

information derived from them in support of criminal justice ambitions.
In the case of ancestry informative markers and the enquiry into biogeo-
graphic ancestry in the context of criminal investigations, approaches to
the interpretation of genetic data are unavoidably linked to prior social
assumptions and categories. This means that forensic geneticists are by
default steeped in a controversial history of classifying human individ-
uals and groups through their genetic properties. Concerns about the
use of ‘racial’ categories in forensic genetics, and their possible rela-
tionship to race issues in criminal justice generally have been reiterated
recently (Chow-White and Duster 2011; Genewatch UK 2005; Ossorio
and Duster 2005), with some even warning of a creeping scientiicated
politics of ‘eugenics’ (Duster 2003) or, more speciically, a ‘racialisation’
of forensic genetics (Skinner 2012) through the production of genetic
‘facts’ based on culturally misconceived and unrelective assumptions.
The operational consequences of utilising technologies which offer the
possibility of inferring genetic ancestry have been mixed. In the Dutch
investigation of the murder of Marianne Vaastra, results from the ana-
lysis of the suspects’ ‘ethnic origins’ successfully changed the focus of
the investigation – and public prejudice – away from North African asy-
lum seekers housed in a hostel near to the crime scene (Sankar 2010).
However, the actions of the Metropolitan Police, following the ancestral
proiling of suspect DNA in the British ‘Operation Minstead’ had nega-
tive effects on police–community relations and led to critical questioning
in the House of Commons (Hansard Col 168W, October 2005).
Some of these techniques continue to face opposition in legal terms,
following the European Council Resolution 2001/C 187/01 of 25 June
2001 (Amorim 2012). Challenges to the informative value of AIMs and
their relation to ethnic identity have been raised for scientiic, social and
practice-related reasons. A recurrent argument attends to the differ-
ences between genetic ethnic identiication and self-identiication of a
donor, or even the attributed ethnicity of a donor through the person
collecting samples. Cho and Sankar (2004) argue that in policing prac-
tice it is often assumed that a pre-conceived reference population and
the suspect correspond, yet methods of assigning race or ethnicity have
not yet undergone a process of standardisation, and are more often than
not dependent on the individual conducting the assignment, and her
interpretation of local reference populations. There is also considerable
concern wherever concepts of ‘race’ and ‘ethnicity’ are used interchange-
ably in ways that neglect their differing social and scientiic connotations
(Bostanci 2011). Populations (groups and subgroups) are the basis for
‘knowing’ genetically, yet categories such as ethnic identity are socially
76 Robin Williams and Matthias Wienroth

constructed, indeed are a vital part of active identiication of individ-

uals and communities (Chow-White and Duster 2011; M’charek 2000;
Skinner 2012). Even biological categories – and reference populations –
are products of human classiication and a necessary reduction of a com-
plex world for eficacious and eficient engagement with it. Using these
to make factual statements, critics anticipate, could lead DNA proiling
to enforce, or at least support, existing unrelective social assumptions
about race and ethnicity.
The boundary between the development and uses of ancestry-informa-
tive SNPs and the development and uses of phenotype-informative SNPs
can be dificult to discern. AIMs are short sequences of DNA known
to vary in frequency between geographically dispersed populations with
no concern necessarily given to phenotypical differences between such
populations. Markers used to predict EVCs may also be associated with
biogeographic ancestry. Some studies are concerned to provide descrip-
tors that are neutral with respect to ancestral features, while also being
concerned to focus on SNPs ‘located in and nearby genes known for
their important role in pigmentation’ in order to predict skin and eye
colour (Spichenok et al. 2011). Other studies involving coloration – in
this case eye colour – point to the dificulty caused by the existence of
a ‘complex and continuous range of intermediate phenotypes distinct
from blue and brown eye colours’ (Ruiz et al. 2013).
These more recent forensic innovations clearly raise issues of genetic
knowledge production, dissemination and use that are different from
those encountered in the earlier history of forensic genetics. Their intro-
duction into policing has usually been supported by an underlying com-
mitment to ‘investigative pragmatics’, a commitment which gives weight
to their potential usefulness in investigations where other approaches
have proved unproductive, and also to the claim that they are simply
variants on more traditional ways of generating potentially useful infor-
mation to support criminal investigations. These arguments stress the
intelligence – rather than evidential – uses of such innovations, the
necessity for careful explanations of their potential to investigators and
a degree of sensitivity about their operational deployment. It is argued
that phenotypical analysis provides only the genetic correspondences of
externally visible and directly knowable physical characteristics of who-
ever is the source of biological material recovered from crime scenes. It
hardly seems worth reminding the reader that knowledge of their own
visual physical characteristics cannot be new knowledge to the (presum-
ably unwitting) sample donor. In addition, such knowledge is irrelevant
even to criminal prosecutions (as opposed to investigations) since, if sus-
pects are identiied through its uses, their DNA can be taken and their
 Suspects, victims and others 77

conventional STR proile directly compared to that already derived from

the crime scene sample. The value of forensic genetic EVC inferencing
is wholly investigative, in that it can be used to shape or support par-
ticular lines of inquiry, and as such, only criminal investigators or their
surrogates will ind it useful. It is dificult to argue that those involved in
such legally sanctioned investigations do not have a right to know – or
infer – this kind of information from recovered crime scene material,
especially when other routine forms of forensic genetic knowledge prove
unusable. However, this is not to say that the introduction of this kind
of genetic technology – and the knowledge derivable from it – is entirely
unproblematic.
Forensic DNA tests and databases are generally acknowledged to be
intrusive interventions into the lives of citizens, even though the degree
of intrusiveness may be contested. For Eric Juengst, the primary ques-
tion which should frame our thinking about the range of legitimate uses
of such technologies was ‘What should society be allowed to learn about
its citizens in the course of attempting to identify them?’ (Juengst cited in
Etzioni 2004, 210). Whilst this clearly is the basic question, any adequate
answer to it has to consider carefully what agencies and actors are imag-
ined to stand for ‘society’, the range of purposes to which such acts of
identiication are put, and the overall values to which these efforts are
oriented. It may also be necessary to distinguish between the different
categories of persons who may be subject to such identiication prac-
tices, especially ‘criminals’, ‘suspects and persons of interest’, ‘victims’
and ‘innocents’. Typically, it is argued that relevant authorities have a
right to know the genetic identities of the irst, whereas members of both
the third and fourth categories are seen as needing protection from the
risks posed by the use of such technologies in pursuit of justice. It is the
second category of persons, ‘suspects and persons of interest’, that cre-
ates most deliberative dificulties concerning the application of forensic
genetics.
Especially signiicant in this regard may be the risk to vulnerable minor-
ity social groups whose members may become the subject of investigative
attention in cases of serious and high proile crimes where genetic proil-
ing has identiied suspect offenders as belonging to such groups. In add-
ition, such investigative attention may feed and exacerbate existing social
and criminal justice disadvantages already experienced by these group
members. These arguments are still to be played out in a number of
contemporary jurisdictions, but as might be expected, there are different
ways in which jurisdictional authorities are seeking to govern the intro-
duction of forensic genetic innovations into criminal justice systems. For
example, in the United Kingdom there seem to be no legislative efforts
78 Robin Williams and Matthias Wienroth

to restrict the application of EVC or AIM technologies, whilst familial

searching is governed by guidelines irst agreed between the Association
of Chief Police Oficers and the Information Commissioner. However,
other European jurisdictions have proceeded with more caution. Many
states have enacted legislative restrictions on the use of genetic tech-
nologies that promise information about biogeographic ancestry or other
phenotypical properties of persons, and the use of familial searching is
not currently allowed in some states of the USA and in many European
countries.

The right to be known and the right to be forgotten

The previous section of this chapter has focused on the legitimate rights
of speciic social agencies to know the identities of those subject to crim-
inal or civil procedure, as well as the obligations and costs that accom-
pany those rights. This section considers two complementary claims that
are sometimes asserted in contemporary modern societies. In the irst
instance, there are circumstances in which individuals may themselves
assert (on their own behalf, or on behalf of others) a right to be known,
seeming explicitly or implicitly to draw on notions of ‘recognition’ that
derive from the work of Hegel. For Hegel, the identity of persons is an
effect of the activities of others – actors and institutions – with whom they
interact. Recognition of another person as an autonomous agent is a cru-
cial instance of such activities since it is both an expression of value of one
for another, and a fundamental feature of self-identity for the subject. In
Norman’s (1976) account, ‘in order to see myself as being equally a per-
son in just this same manner, I must not only recognise others as persons
but also be recognised by them as a person. Thereby my own existence is
given an objective validity’ (Norman 1976: 47–8). This deeply embedded
philosophical claim has been enacted in a variety of ways and in a variety
of circumstances in modern societies. Contemporary notions of citizen-
ship and the entitlements that accompany it are among the more obvious
administrative realisations of this aspect of identity, and there is a large
body of political and legal literature which relects on the meaning and
signiicance of the recognition of the self by legal and social institutions
(e.g., Douzinas 2002; Honneth 1995; Szreter and Breckenridge 2012;
Taylor 1994; Thompson 2006).
It is for these reasons that we accord some signiicance to the claim
that there are circumstances in which it is reasonable for individuals to
assert on their own and others’ behalf a right to be (personally or cat-
egorically) known. Certainly modern states seem to acknowledge an
obligation to meet this right through a series of measures. These include
 Suspects, victims and others 79

birth records and death records, passports and a variety of other entitle-
ment documents depending on the jurisdiction in question. On some
occasions, there will be bioinformatic features of such records, either
as component elements (as in the case of biometric passports), or as
underpinning evidence (as in the case of bodies identiied through in-
gerprints or DNA). Whilst many of these instances are elements within a
state control apparatus, the establishment and use of such technologies
are also shaped by the desire for recognition on the part of the subject
whose identity is being captured by them. It is for both of these reasons
that modern states have an obligation to record stable features of indi-
viduals’ identities. Those whose identities have not been recorded in such
ways may well ind themselves unable to beneit fully from many aspects
of contemporary life, including international travel, health provision
and a range of other forms of state assistance. In addition, even those
with recorded identities may seek to know to whom they are genetically
related, and a right to obtain that knowledge is increasingly embedded
in adoption, surrogacy and reproductive donation systems in many soci-
eties. Finally, the extensive investments in organisational infrastructures
and technological support for ‘disaster victim identiication’ also test-
ify to a willingness to acknowledge the signiicance of individuals being
authoritatively ‘known’ by others, even after death.
Whilst there is no necessary connection between socio-legal ‘recogni-
tion’ and DNA as such, it is clear that conidence in the application of
genetics is increasingly critical for the resolution of contested claims over
identity, and therefore an increasingly trusted anchorage for the recog-
nised identity of both living human subjects and human remains.
What then, about the other element in a possible pair of such (puta-
tive) rights – the ‘right to be forgotten’ (elsewhere known as the ‘right
to deletion’, the ‘right to oblivion’ or ‘droit d’oubli’). Views of the exist-
ence of such a right are currently unsettled, at least as far as its current
instantiation in proposals concerning data protection rights of Internet
users are concerned. However, the notion of a right to be forgotten reso-
nates with a recognised feature of most modern criminal justice regimes
since these usually contain within them rehabilitative as well as punitive
imperatives. Most contemporary data protection legislation asserts that
individuals generally have a right to the deletion of information about
them when this information is no longer needed for legitimate purposes,
although special consideration is often given to the retention of informa-
tion relating to criminal inquiries.
In the case of criminal matters, however, an additional argument is
sometimes made that the retention and dissemination of information
about offenders may also interfere with the state’s ability to achieve the
80 Robin Williams and Matthias Wienroth

legitimate goal of rehabilitating them, and then again, the informational

rights of those convicted of criminal offences may be seen as very dif-
ferent from those who have only been suspected of involvement in such
offences, have once been ‘persons of interest’ to the police or witnesses
to a crime. Forensic genetic practices can interfere with this right when
DNA databasing regimes allow the police to retain proiles from suspects
or from the convicted for extended periods of time. It is for this reason
that most DNA databasing legislation tends to have complex rules allow-
ing for a differential retention of proiles from different categories and
ages of persons for varying periods of time. Alongside these variations,
there exist different rules for speculative searching according to the sta-
tus of the person who has been sampled.6 The most recent set of changes
to the retention regime of the NDNAD of England and Wales has seen
the establishment of the ofice of the ‘Biometrics Commissioner’, who
will consider all requests by the police for the retention of DNA proiles
from those who have not been convicted of a crime but are still the sub-
ject of ‘legitimate’ and grounded police suspicion as being a threat to
individual safety or state security.

Conclusion
Many different kinds of genetic information are mobilised in a number of
diverse environments, including medical research, health care, advertis-
ing and popular culture. In each of these domains and others, claims for
genetic informativity – that analysis of the human genome can provide
domain-relevant information – are subject to differing criteria of evalu-
ation and accountability. The kind of genomic information sought and
produced by those using DNA proiling in forensic investigations varies
according to the speciic technologies used and on the more particular
civil or criminal context in which such data are required, produced and
negotiated. These contexts have administrative, legal and social dimen-
sions that inluence the production and interpretation of forensic genetic
data, and as such their informative value and normative authority.
It is the view of some academic and legal authorities that a person has
no reasonable expectation of privacy in their DNA proile if the sam-
ple from which the proile was developed was taken lawfully during the
6
For reasons that we cannot fully understand, most contributors to the European debate
about this topic prefer to characterise it as the problem of ‘retention’ whilst in the USA
it is more often characterised as the problem of ‘expungement’. It is the same problem,
although it is perhaps worth noting that the early dificulties experienced with the illegal
retention of proiles on the NDNAD by the (then) UK Forensic Science Service were
a result of Police Service ‘dificulties’ in establishing the basis for robust expungement
procedures.
 Suspects, victims and others 81

course of a criminal investigation, and if the proile contains information

without any medical or other personal meaning. Proponents of this argu-
ment usually cite its value to crime control imperatives, but also restrict
the uses of such proiles to ‘law enforcement’ or to the ‘investigation of
crime and the prosecution of offenders’, ‘criminal justice’ or ‘police’ uses.
For others, such privacy rights are distributed according to the category
of persons whose biological material has been sampled, alongside the
recognition that individuals can move from one category to another, and
that there may also be good reasons to treat adults who fall into any of
these categories differently from children (see, for example, Levitt and
Tomasini 2006).
In the irst edition of this book, Henk ten Have (1997: 88) wrote:
‘The fact that knowledge is available should not itself dictate its appli-
cation. What is necessary is prior identiication of the goals that we
want to accomplish in using the knowledge, a careful balancing of the
beneits and harms generated through the application of knowledge,
and a delineation of the norms and values that should be respected.’
In the course of this chapter we have tried to follow this advice by
examining how a widening variety of forms of genetic knowledge are
increasingly captured during the course of criminal and other legally
authorised investigations. In each case the epistemic authority of gen-
etic science is deployed as a powerful source of intelligence or evidence
to support inquiries and judicial decision making. Globally, police
investigators have been especially enthusiastic in their embrace of these
possibilities. In turn, forensic geneticists have been eager to expand
the repertoire of technologies available to the police by responding to
recurrent investigative questions that are capable of being answered –
at least in part – with new or modiied genotyping practices. Even the
most precautionary critics would not want to deny to legally recognised
authorities the powers to use these technologies to establish the iden-
tity of criminal suspects, or those who have died following violence or
natural disasters.
This mutually supportive enterprise, the goal of which has largely been
to improve the effectiveness and robustness of criminal justice and the
rule of law, has been both reinforced and disturbed by a variety of delib-
erations and commentaries in which other values, risks and desiderata
have been considered alongside those of security and justice. Most usu-
ally cited amongst these other values and desiderata are the swarm of
features that make up respect for human dignity, and it has been an orien-
tation to this swarm that has shaped how questions of a ‘right to know’,
a ‘right to be known’, and a ‘right to be forgotten’ bear on the ambitions
and practice of forensic genetics. These features include consideration of
82 Robin Williams and Matthias Wienroth

the ways in which privacy rights, the protection of autonomous action,

and safeguarding the liberties of human subjects all bear upon the use
and dissemination of knowledge of individuals produced by the applica-
tion of forensic genetics. In the course of this chapter we have tried to
indicate the heterogeneity of technologies that are often included in the
simple designation ‘forensic DNA’ or ‘forensic genetics’ along with some
of the complexities that occur when different kinds of individuals – sus-
pects, victims, offenders, persons of interest, relatives, volunteers, and
others – either provide samples for analysis or are identiied through the
proiling of someone else’s sample.

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6 Empowered by choice?

Mairi Levitt

At the heart of the right to know and the right not to know debate is the
right to choose, which is predicated on the right to information, and other
relevant resources, to enable a choice to be made. In many areas of every-
day life choices have proliferated; in afluent countries there are more TV
channels and types of eggs, ways of serving coffee or listening to music
than ever before. Many of these choices may be trivial, but patients and
parents are also increasingly bombarded with information and advice on
more serious matters concerning health and child rearing. Patients and
parents can obtain information to help make a choice of where to go for
hospital treatment or which school they would like their child to attend.
Hospital and school league tables and websites provide information on
outcomes (e.g., survival rates after different types of surgery or examin-
ation pass rates), stafing levels and other factors that might inluence
decisions (hospital car parking or school uniform policy). Even in soci-
eties with universal health and education provision, it is acknowledged
by providers that the more ‘informed and articulate’ have more choices,
including the choice to go elsewhere into the private sector.
This chapter irst discusses the choice agenda in health and the effects
of choice on the chooser. Next, the possibility and desirability of chan-
ging the focus from individual autonomy and ever-increasing choice is
considered and discussed through the example of the genetic screening
of embryos and children.
The assumption is frequently made that the individual will be empow-
ered by choice, and more empowered when more choices are offered. In
a study of an attempt to ‘empower’ the lives of elderly people living in
long-stay hospital wards, empowerment was said to be about:
people’s ability to control their lives and act as autonomous individuals. It is
about people being able to deine their own needs, rather than their needs being
deined for them.
(Ahlquist 1997, p. 4)
Empowerment was a means to improve the quality of individuals’ lives.
In any society there is a relation between power and status on the one
85
86 Mairi Levitt

hand and the choices available to people on the other. The impoverished
are not only economically poor but will generally have fewer choices and
control in all areas of their lives than the more afluent. Although increas-
ing choice for all does not necessarily reduce these inequalities, the cen-
trality of choice in education and health in the UK stresses an equal
opportunities agenda.
Choice has always been available to some people. Some have had the resources
to opt out of the NHS. Others have proved informed and articulate enough to
access choices within the NHS that are not routinely available to others.
The Government believes that all patients should have the advantages of
choices over their healthcare. The NHS should develop as a personalised service,
open to everyone.
(Department of Health 2000)
The NHS Plan quoted above went on to stress the importance of a
diversity of provision from which choices can be made to meet differ-
ent needs. ‘Equity and Excellence’ was the title of the government white
paper (Department of Health 2010). Decision making, it stated, is to
be shared with patients who are to have information, choice and con-
trol. This is said to result in increased eficiency and higher standards in
the health-care system. The subsequent consultation on the proposals
had a ‘vision of informed, empowered patients making personal choices’
but acknowledged that there are ‘major challenges in making sure that
everyone can exercise choices that do not cause problems for them or the
NHS (Department of Health 2010, point 7).
Choice alone, even in the absence of economic costs, does not ensure
equality. In health care, and others areas such as education, the active,
information-seeking, articulate parent or patient is both a problem,
because their success in getting the best service impacts on others, and
the model to emulate.
While it could be argued that what people really want is access to a
good local hospital, rather than more choices, the assumption is that
increased choice leads to greater satisfaction. Where there is more choice,
fewer people are likely to get their irst choice because the hospitals and
facilities considered to be the best will tend to be oversubscribed. A
report on the ethics of rationing in the NHS makes the case for ‘nudg-
ing’ patient choice:
Patients should be ‘nudged’ towards preferred uses of NHS services, through the
provision of clear information and making it easy for patients to make the ‘right’
choices.
(Rumbold et al. 2012, p. 44)

Since the hospitals considered to be the best will be the most dificult to
access, it seems likely that the existence, if not the reality, of choice will
 Empowered by choice? 87

widen inequalities because those with the most social capital will ind out
the criteria to be given priority and endeavour to fulil them, whatever
they are.
In the commercial sector companies endeavour to persuade consumers
to choose their products and be satisied enough with their choice to pur-
chase them again. Public providers hope that, in taking on responsibility
for choice from the professionals, individuals will be both more satisied
and more engaged in the process.
There is extensive research into the effects of an ever-increasing range
of choices on the chooser. While this is mainly in the ield of consumer
behaviour it has been applied to other ields, including choices in higher
education (Arterian 2007) and health (Botti et al. 2009). Some key ind-
ings of these US studies are that:
• Being able to make choices has a beneicial effect on motivation and
performance in research where participants are asked to complete
tasks, including creative tasks, and at work where people have some
control over their physical environment.
• There are class and cultural differences in the value accorded to being
able to choose.
• Greatly increased choices in consumer goods can lead to confusion and
indecision resulting in people being reluctant to choose at all (Chua
and Iyengar 2006, p. 56).
• Being offered choice between undesirable options causes stress, anx-
iety and conlict in the chooser (Chua and Iyengar 2006, p. 54). In
these circumstances those for whom a choice is made are more satis-
ied than those who choose for themselves.
• Those who explore every option before choosing (‘maximisers’) tend
to have high expectations which are unlikely to be fulilled and they
suffer from dissatisfaction and stress (Schwartz 2004).
These studies begin to differentiate between choosers and subdivide
them into groups according to personality traits, assessed by psycho-
logical tests, by culture and socio-economic status. The indings con-
irm that having choices is valued by those who are well educated, in
a middle class or professional occupation and from a Western cultural
background that valorises individualism rather than inter-dependence
(Chua and Iyengar 2006). As Matravers argues, in Western societies to
be an adult is to be an agent, with the ability to choose and liable to be
held to account for the choices made (Matravers 2007, p. 4). Stephens,
Markus and Townsend argue that choice is associated with agency but
that agency is more central to the middle classes than it is to the work-
ing class, for whom conformity to the group is important to well-being
(Stephens et al. 2007, p. 827).
88 Mairi Levitt

Choice and responsibility

In making a choice individuals become responsible for the outcome. It
is their choice, whether good or bad. Of course not all choices can be
lumped together and when it comes to choices that have a tragic con-
sequence (e.g., the death of a newborn baby) parents who made the
choice for themselves were found to cope less well with the outcome.
An ethnographic study comparing parents with newborn children on
life support in France and the USA found that decisions to switch off
the machine were left to the physicians in France, whereas in USA par-
ents had to make decisions themselves. The researchers concluded that
‘when confronted by tragic choices individuals are likely to be better off
if those choices are either physically or psychologically removed from
them’ (Botti et al. 2009, p. 349).
The authors do not use their indings to call for a return to paternalism
but rather to argue that it is too simple to say offering choice is best when
dealing with ‘messy realities’ and that the demand for participation will
vary between parents (Botti et al. 2009, p. 350). Bearing the responsibil-
ity for choice was a burden for parents in those circumstances; they felt
they were being asked to choose for their child to die, and to be able to
follow expert advice provided support and made them feel better about
the decision.
Similar indings were made in a qualitative study of UK women making
decisions in pregnancy about antenatal screening (Ahmed et al. 2012).
In the UK health professionals are required to provide the information
necessary for patients to make ‘autonomous, informed decisions’ by pro-
viding the necessary value-neutral information and being non-directive
(Ahmed et al. 2012, p. 2). While some have long argued that the ideology
of genetic counselling does not, or cannot, be realised in practice (Clarke
1991; Mitchie et al. 1997) this study by Ahmed et al. found that women
wanted advice to help them come to a decision about screening. The
women interpreted ‘advice’ in different ways: as information alone, as
guidance and support and as providing direction. Most understood that
professionals did not want to give an opinion for ethical reasons, and the
fear of being sued, but they would have valued their advice in order to
help them come to their own decision (Ahmed et al. 2012, p. 6).
The problem with making choices in the real world is that outcomes
are not predictable and so however much information is available it can-
not answer the crucial question: will my baby be healthy? If I undergo
one more course of IVF will I have a successful pregnancy? However
small the risk, your baby may be the one in a thousand that has the
condition; however many courses of IVF you have had there is a chance
 Empowered by choice? 89

that the next one will be successful so how can you make the decision to
stop? While the idealised situation is one in which ‘the individual is free
to select whatever action she or he desires…’(Paton 2007), in practice
individuals live in particular social and cultural contexts that impinge
on their decision making. Where IVF treatment is publicly funded, treat-
ment will usually be limited; in England and Wales the recommendation
is that three cycles should be offered for women who meet the criteria
(National Institute for Clinical Excellence 2004). Women who can pay
for private treatment have more choices. In Peddie et al.’s study of women
who had undergone IVF without success, the psychological, emotional
and social costs of prolonged and unsuccessful treatment were clear but
the decision to end treatment was dificult. Two themes in the indings
were unrealistic expectations of success and social and media pressure;
the social obligation to keep trying new technology and the constant
promises of new breakthroughs that might offer new hope (Peddie
et al. 2005, p. 1946). In this example, women are being asked to choose
between undesirable options: stopping treatment and so acknowledging
that they will almost certainly never give birth, or continuing expensive
treatment which affects their health with a diminishing chance of success
after unsuccessful cycles.
The choice discourse is convenient for service providers and dificult
for individuals to resist. However, as discussed, ever-increasing choices
in consumer goods and health care do not ensure consumer or patient
satisfaction or happiness. Rather, a ‘proliferation of options seems to
lead, inexorably, to the raising of expectations’ (Schwartz 2004, p. 186).
In a publicly funded health system, there will inevitably be dissatisfaction
among those who ind that the choice they made is not in fact available.

Choosing as self-expression
The act of choosing is not just important because of the value attached to
autonomy and the association of choice with freedom but because mak-
ing choices is an expression of who we are (Iyengar 2010). We deine who
we are in relation to other people, so choosing is actually a social act that
communicates to others what sort of persona we want to portray. As we
choose we ask ‘What kind of individual am I, and given who I am, what
should I want, and given what I should want, what do I choose?’ (Iyengar
2010, p. 272).
In this self-conscious model of the individual, we constantly monitor
the reactions of others and modify our behaviour and choices accord-
ingly. In the classic social constructivist account human beings construct
their social world through interactions with others and then perceive
90 Mairi Levitt

it as objective reality which in turn constrains their actions. The ability

to shape our environment could mean that human beings were over-
whelmed by the constant choices that had to be made. As discussed earl-
ier, the multiplication of choices can lead to confusion and anxiety, and
the way of resolving this is to limit the need for decisions by establishing
standards, routines and habits that reduce the need for choice (Schwartz
2004, p. 114).
In every society there are socially acceptable ways of doing things that
remove the need for individuals to decide how to act in every situation;
their actions become habitualised: ‘Habitualization carries with it the
important psychological gain that choices are narrowed … This frees the
individual from the burden of all those decisions’ (Berger and Luckmann
1967, p. 71).
In many modern societies choices have multiplied in areas where there
were once strong norms and sanctions for those who broke them, for
example, sexuality, family life and gender roles.

Removing choice
As ‘choices’ are burgeoning in both the public and private health sec-
tors, is there an alternative to the stress on choice; could choices be
restricted on ethical grounds that would be socially acceptable? The
idea of simply removing choice has been discussed in relation to par-
ticipation in medical research and to organ donation, both areas where
informed consent must be obtained (Evans 2004; Harris 2003). The
value attached to informed consent makes any suggestions of com-
pulsion controversial. Evans (2004) argues that, in a publicly funded
health-care system, there is a moral duty to take part in research in
some circumstances. He limits this to cases where the patient has sought
treatment for a condition and is eligible to be enrolled in research into
treatment, the research is not expected to harm the patient and it may
beneit others. In these circumstances enrolment should be automatic:
And because not everyone can be relied on to do their duty, in clinical research
… then responsibility for the decision must be given to others. You should be
entered into the research automatically, and if you want to obtain treatment in
these circumstances then you should no more have a veto over taking part in the
research than you should have a veto over paying your income tax.
(Evans 2004, p. 202)
The argument is that those currently having treatment beneit from those
who took part in medical research in the past and thus have an obligation
to help others in the future.
 Empowered by choice? 91

In the case of organ donation many European countries have some

form of opt-out system where the onus is on those who do not want
to donate to make their wishes known. However, in practice, even in
Spain, which has the highest rates of cadaveric donation, organs are
not removed unless the family agrees (Navarro-Michel 2011, p. 160).
Compulsion even in limited circumstances is controversial. After all, the
emphasis on informed consent and the frameworks for ethical review
of research involving human subjects followed the abuses carried out in
the name of medical research in the 1930s and 40s. Abuses in human
medical research have often involved subjects who are neither high sta-
tus nor powerful. So, looking at the analogy Evans draws with income
tax payment above, there are ways in which the elite may minimise their
tax payments with the help of experts, while most UK employees have
tax deducted by their employer. No doubt there would also be ways of
avoiding compulsory enrolment in research for those with the resources
to seek alternative treatment.
Imposing compulsion in an attempt to reach a desired end in health
care – a wider cross-section of medical research subjects, more organs
for transplant – might not be workable in a democracy. Would the media
soon be reporting on tearful relatives whose loved ones’ organs were taken
against their wishes or on people refusing treatment because they did not
want to be enrolled in medical research? But what about alternative eth-
ical framings that are less individualistic? There have been criticisms of
the value accorded to individual autonomy and a counter move in eth-
ics to more communitarian values such as solidarity, reciprocity, dignity
and prudence (Hayry 2003; Knoppers and Chadwick 2005). When dis-
cussing donations to biobanks, population genetic databases established
for research purposes, the argument can be made for a solidarity-based
approach rather than one based on individual autonomy (Prainsack and
Buyx 2012). However, in other areas such as genetic testing, a solidarity
approach seems less tenable because it would require people who are
making choices about what is best for themselves or their children to
focus on broader issues.

Genetic tests, treatment and enhancement

For the individual, genetic tests are available for an ever-increasing range
of traits that carry elevated risk of developing a disease or behavioural
condition. Most people are probably unaware of the profusion of genetic
tests but those who are pregnant, undergoing IVF or have a family his-
tory of a speciic disorder will be offered a limited range of tests. While
access to genetic testing will be restricted for publicly funded patients,
92 Mairi Levitt

and may vary according to their location, privately funded patients have
more choices, which in turn puts pressure on the public health service
to increase availability. Since 2009 UK clinics that offer fertility services
have been licensed to test patients for speciic genetic traits through pre-
implantation genetic diagnosis (PGD), rather than having to apply on
a case-by-case basis. Since 2010, traits that indicate lower penetrance
and late onset conditions can be included, meaning that a percentage
of those with the trait will never develop the condition and others will
develop it only in adulthood. These include BRCA1 and BRCA2 muta-
tions that carry an increased risk of breast and ovarian cancer and muta-
tions associated with early onset Alzheimer’s disease. For UK women
with a breast cancer trait, their lifetime risk of developing breast cancer
is raised from around 12 per cent to over half. The Human Fertilisation
and Embryology Authority (HFEA) undertook a consultation entitled
Choices and Boundaries, before introducing PGD for these conditions
(HFEA 2006). A response from GeneWatch UK objected to the use of
the term ‘choice’ rather than ‘decision’ in the title of the consultation, on
the grounds that it ‘tends to turn the process into one of marketing, not
serious deliberation’(GeneWatch UK 2006). The particular imperative
to emphasise choice in genetics is of course the shadow of eugenics in the
sense of state-enforced controls over births. Wachbroit and Wasserman
argue that this legacy of abuse is why those patients who are offered gen-
etic tests and disease screening are seen to require specialist counsellors.
The oficial role of genetic counsellors is non-directive; they are to offer
individualistic, client-centred therapy that allows patients to make their
own decisions (Wachbroit and Wasserman 1995, p. 238). As has been
pointed out, the cumulative effect of individual choices can, like state-
enforced controls, also lead to societal change. For instance, preferences
for boys over girls have resulted in distorted sex ratios in parts of India
and China (Hesketh 2011).
Regulation within a country may limit access to PGD, prenatal testing
and childhood testing but direct-to-consumer testing operating in less
regulated environments opens up availability. Is individual choice in this
area empowering and, if so, who is empowered?
Savulescu supports a broadening of PGD to non-disease traits. In his
view, parents should have information about non-disease traits through
genetic testing, be able to freely choose which child to bear through
PGD and be provided with ‘non-coercive advice’ on which child has
the highest chance of having the best life (Savulescu 2001, pp. 424–5).
Using the Internet and international market, consumers can currently
purchase tests for themselves and their children either individually, as
a package, or arrange an entire genome scan. They can investigate their
 Empowered by choice? 93

genetic risk for all sorts of physical and mental disorders, including com-
plex multifactorial disorders, look into their genetic ancestry, identify
those genetically related to them or check out their child’s ‘inborn tal-
ent’. Companies based in the USA that offer hundreds of tests and even
whole genome scans include 23andMe, deCODEme and SeqWright,
all easily found by a web search engine. The California Department of
Public Health wrote to thirteen companies based in the state requesting
that they ‘cease and desist’ from offering testing to California residents
(Magnus et al. 2009). The state of California requires companies offering
such tests to be licensed and patients should not access tests without a
physician’s order (ibid.). The companies that replied made three argu-
ments: that genetic information is a fundamental part of a person and
individuals have a right to it; that the tests are not really genetic because
they give information on genetic predisposition; and that people should
have access to their own health information directly, without having to
involve a physician (ibid.).
The company 23andMe markets DNA testing as ‘a “one size its all”
perfect gift’ that will allow the recipient to: ‘Gain insight into your traits,
from baldness to muscle performance. Discover risk factors for more than
200 health conditions with the assurance that the list grows each month.’
These ‘health conditions’ include serious diseases like breast, stomach
and lung cancer, Parkinson’s disease and Alzheimer’s disease, so it might
not be a ‘perfect gift’ for all! For those testing newborn babies or toddlers
who cannot yet spit, there is the opportunity to send for a special test kit
that requires only a quarter teaspoon of saliva to be collected. No restric-
tions on parents testing their children are mentioned here.
Although the arguments evoke individual autonomy and the right to
know, company websites may also appeal to solidarity and community
in their marketing. The 23andMe website contains research indings and
in a section entitled ‘core values’ has the following message to potential
patients:
you’re joining in a community of motivated individuals who can collectively
impact research and basic human understanding. In today’s connected informa-
tion age, it’s no longer just about me. Instead it is about how we can change our
understanding of ourselves by joining together.

Another group of companies target their products speciically at parents

of young children. Companies such as talent4me and My Gene Proile
offer a raft of genetic tests claiming to reveal your child’s ‘inborn tal-
ents’. Parents are told that they will ind out whether their child has a
particular sporting talent or is musical so that they know how to best
direct their child and avoid the frustration and failure that comes of
94 Mairi Levitt

encouraging participation in a type of sport in which he or she will not

succeed. Parents can replace the hit-and-miss approach of giving their
child all sorts of enrichment classes and instead take scientiic direction,
know where the child’s talents lie and ‘spend money wisely’ (My Gene
Proile).
Leaving aside the question of the validity and reliability of the tests and
how many parents have actually used them, it is clear that the website
material plays on parental insecurities and competitiveness. Your child
can only succeed by having the edge over other people’s children:
These advertisements describe complex, confusing, and anxiety-producing gen-
etic concepts for the consumer. Drawing on themes of ‘choice,’ ‘hope,’ ‘fear,’ and
‘peace of mind,’ these advertisements validate patients’ worries about their gen-
etic risks and appeal to their desire to assert control over potential outcomes.
(Golhurst et al. 2002)

The advertisements are designed to create desires and demands in par-

ents, increase the numbers using genetic testing and provide ‘solutions’
to problems that parents did not previously know they had (GeneWatch
UK 2006). The view of genes conveyed in the brochure (English version)
is that they are static things that can be read off to see whether or not a
child has a strong ‘leadership gene’ or ‘performance gene’ so that parents
can have scientiic direction rather than a hit-and-miss approach to help-
ing their children.
If parents took up the opportunity to access these tests to get the edge
for their child, or prospective child, weighing up what to do with the
results, whether using PGD or discerning a child’s ‘inborn talent’, may
not be straightforward. The more tests that can be performed the harder
it will be to decide which the ‘best’ potential child is, or, which inborn
talent to pursue. The embryo with the predisposition to aggression and
criminal behaviour seems an obvious one to discard but if the increased
risk is only in cases where the child is maltreated (Caspi et al. 2002) then
perhaps this is better than a predisposition to alcoholism. If your child’s
inborn talent test reveals a talent for rugby football and susceptibility to
alcohol addiction then perhaps the responsible parent would not encour-
age the child to play rugby because of the temptations of post-match
alcohol consumption in later years!
While parents might struggle with information and choice overload the
effect of free choice at the social level also has to be considered. Fukuyama
argues that there will be in effect a ‘genetic arms race’ with parents forced
to ‘choose’ to prevent their child being disadvantaged (Fukuyama 2002).
Currently parents only have a choice from available embryos for speciic
traits but if many people chose, say, taller and more intelligent children (if
 Empowered by choice? 95

such a thing became possible), then the average height and IQ would sim-
ply rise. As an enhancement becomes normal then it is no longer advan-
tageous and so those who wanted their child to have the edge would need
to seek another ‘improvement’. As Hirsch wrote: ‘If everyone stands on
tiptoe, no one sees better’ (Hirsch 1977, p. 5).
As research continues and more tests are developed there are also con-
cerns that a right to know may become a routine requirement for parents
to gain access to welfare services or insurance-based health-care systems.
In a report on behavioural genetic tests, personalised information on
behavioural predispositions was seen as valuable but:

key concerns are that individuals remain free to choose whether or not they pro-
vide this information and suffer no discrimination or disadvantage from with-
holding their genetic information, and that any use of genetic information is
equal and equitable – advances in behavioural genetics should not beneit one
group in society more than another.
(Dixon 2005, p. 15)

If the behaviour in question is illegal, stigmatised or imposes signiicant

economic and social costs on society, these ‘key concerns’ that focus on
individuals would have to compete with concerns about protecting the
public. As the range of available tests continues to increase, what limits
will there be to individual responsibility? Hearing of a child born with
a condition for which there is routine prenatal testing, such as Down’s,
people might ask whether the mother ‘took the test’, but parents who
choose to continue with the pregnancy are not necessarily condemned
(although there is evidence in Britain of an increase in negative attitudes
to welfare recipients in general and there may be an assumption that the
disabled will be claimants) (Park et al. 2013, p. 30). However, in the case
of tests for behavioural conditions the parents’ decision could be seen as
a public rather than a private matter. The child with a genetic trait associ-
ated with aggressive behaviour, addiction or impulsive behaviour might
engage in behaviour that negatively affects others. While research indi-
cates that these behaviours have multifactorial causes, evidence on gen-
etic traits has already been presented in criminal courts, usually by the
defence, and has in some cases resulted in reduced sentences (Calloway
2009; Farahany and Coleman 2006). Such evidence might also be used
to argue that these individuals are particularly dangerous and likely to
reoffend so should have a harsher sentence, particularly if they knew
their genetic risk (Levitt 2013).
Parents, especially mothers, have choices to make that were unknown
in previous generations and this undoubtedly increases anxiety. For some
parents choosing PGD is empowering; they may be able to choose to
96 Mairi Levitt

implant an embryo free of a speciic genetic disease or have a child who

is a tissue match for a sibling (a so-called ‘saviour sibling’).1 But when
it comes to non-disease traits or mild conditions, are there any lines to
draw or should all decisions on their children’s genetic make-up be the
responsibility of parents, however much further our knowledge and tech-
niques develop? At the very least, if there is to be a free market then
parents would need some way of managing the options available; perhaps
expert choice advisers and packages of tests with computer-assisted deci-
sion-making programmes. Although parents are focused on their own
children, it is conceivable that some will see a shared interest in coming
together to resist testing, selection or enhancement in particular areas
and/or to promote it in others.

Choice
The picture that emerges is of the modern individual being bombarded
with choices accompanied by more or less subtle messages about what
the good parent or the responsible person should do. The right to
know has become the responsibility to know. In the ield of health care
and especially genetics, what was considered to be part of nature that
humans could not change is being opened up to choice. As discussed
in this chapter, in speciic circumstances choice can be a burden from
which people would like to be relieved; it can lead to stress and con-
fusion or if the available choices do not meet expectations, to disap-
pointment and regret. Faced with a long and complicated menu at a
restaurant, or another familiar set of choices, we can fall back on habit
and have what we always have or opt for something new and unknown;
the consequences are probably trivial. When it comes to choices made
over our own or our children’s health we are more likely to be in an
unfamiliar situation where we have no experiences or habits to fall back
on, yet our choices could have serious consequences. In this context
choice and individual autonomy seem to be an insubstantial ethical
framework that increases responsibilities but does not give us the means
to choose well.

1
There is also the possibility of parents wishing to select an embryo with what others
would consider a disability. This was prohibited in 2008 in the UK by an amendment to
the UK Human and Embryology Act (section 13, subsection 9). This amendment was
probably a response to the highly publicised case in 2002 when a lesbian couple selected
a sperm donor with hereditary deafness, and subsequently had a deaf child. However,
they did not make use of PGD as their donor was a family friend.
 Empowered by choice? 97

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edn, Oxford: Blackwell, pp. 237–45.
7 DIY genetics: the right to know your own
genome

Barbara Prainsack

Introduction
This chapter focuses on one speciic area, namely the emergence of
genetic and genomic tests offered online. These tests often require test
takers to submit no more than their personal and credit card details
and a DNA sample (typically a certain amount of saliva). The fact that
many of these online services do not require that test takers go through
their physician or any other medical professional has earned them the
label ‘direct-to-consumer’ (DTC) or ‘do-it-yourself ’ (DIY) genetics.1
These labels, however, are confusing, as most online genetics compa-
nies offering health-relevant information do actually require the involve-
ment of a health professional somewhere in the process (for example,
test takers may need to order the test via their physician, but can access
results directly online). Effy Vayena and I introduced the term ‘beyond-
the-clinic’ (BTC) genomics as a label under which the various forms of
interactions between service providers, users and medical professionals
can be subsumed, and which also accommodates the increasing overlaps
between online genetics and the clinic (Prainsack and Vayena 2013; see
also Topol 2012; Vorhaus 2010).
It should be noted here that although some arguments presented in
this chapter are applicable also to tests for genetic ancestry, the focus of
the chapter is on tests that are explicitly health-relevant.

What does it mean ‘to know your own genome’?

What is ‘the genome’?

When asking whether a person has, or should have, the right to know
her own genome, what do we mean by ‘genome’? I suggest that we use
an inclusive deinition of the term ‘genome’ for this purpose: any data
1
For reasons of simplicity, I will use the term ‘genetic testing services’ to refer to both ser-
vices providing genome-wide analysis and those testing certain genes speciically.

100
 DIY genetics 101

Table 7.1: Selection of results from personal genome testing company

23andMe.
Elevated Risk ? COMPARED TO
NAME CONFIDENCE YOUR RISK AVG. RISK AVERAGE
Atrial Fibrillantion [sic] 20.5% 15.9% 1.29%
Parkinson’s Disease 2.4% 1.6% 1.50x
Abdominal Aortic Aneurysms
Asthma
Brain Aneurysm
Keloid
Ovarian Cancer ♀
Paget’s Disease of Bone
Myeloproliferative Neoplasms
Preeclampsia ♀

Decreased Risk ? COMPARED TO

NAME CONFIDENCE YOUR RISK AVG. RISK AVERAGE
Type 2 Diabetes 14.0% 2.07% 0.68x
Breast Cancer 10.0% 13.5% 0.74x
Restless Legs Syndrome 3.1% 4.2% 0.75x
Colorectal Cancer 3.0% 4.0% 0.75x
Melanoma 1.3% 1.7% 0.75x

Source: author, with permission from 23andme.com.

representing a sequence of nucleotides in our genome – even if only

within one speciic gene or region – is considered genomic information
in the context of my argument. These could be print-outs from sequenc-
ers or other tools, cleaned datasets or interpreted information (such as
the disease risk calculations that online genetic testing services provide
to their customers; see Table 7.1).
Non-human genomic information contained in a person’s body is not
included in the term ‘genome’ for this purpose, because the analysis of a
person’s microbiome raises different questions from the analysis of a per-
son’s human DNA. This is despite the growing use and utility of personal
microbiome analysis for medical and other purposes.

What does it mean to ‘know’ your genome?

The question of what ‘knowing’ means in the context of a right to know
one’s own genome is more dificult to answer. Also here, I consider a
wide deinition of ‘knowing’ most helpful. I propose the distinction of
102 Barbara Prainsack

Table 7.2: Different forms of ‘knowing (and sharing) one’s own

genome’.

Instances of knowing (and Should there be a right

sharing) one’s genome Who is affected? to know?
1. Genetic analysis within a only tta (or MZb twin or yes (pre-testing
clinical context multiple) information and
dialogue with others who
are potentially affected
should be encouraged by
test providers)

2. Genetic analysis carried only tt (or MZ twin or yes (pre-testing

out by a commercial multiple) information and
provider and disclosed dialogue with others
directly to the tt who are potentially
affected should be
encouraged by test
providers)

3. Access to raw data only tt (or MZ twin or yes

multiple)
4. Download and store raw only tt (or MZ twin or yes
data and interpretation multiple)

5. Share with biological tt, biological relatives yes (but dialogue

relative with others who are
potentially affected
should be encouraged
before sharing)
6. Share with other tt, biological relatives yes
researchers
7. Make it public tt, biological relatives yes (but dialogue
with others who are
potentially affected
should be encouraged
before sharing)

a
test taker(s).
b
monozygotic.
Source: author.

seven instances of ‘knowing’, including some where knowing overlaps

with putting knowledge to use. These seven instances are summarised in
Table 7.2.
The irst instance of ‘knowing’ one’s genome is having it analysed in
the clinic (see Table 7.2, 1). The typical answer to the question of whether
 DIY genetics 103

people should have a right to have their genomes analysed in a clinical

context has so far been afirmative, and this right has been practised as
long as genetic analysis has existed – at least in wealthy countries where
genetic testing has been used in the clinic. A typical requirement for
patients to access genetic testing in the clinic is the presence of a medical
indication, such as particular symptoms or other reasons to suspect gen-
etic factors contributing to a particular disease or problem, a family his-
tory of diseases where genetic factors are known to play a signiicant role,
or genetic testing in the reproductive context, such as pre-implantation
genetic diagnosis, genetic carrier testing prior to procreation. Relevant
caveats here are that not all of these scenarios are legal everywhere (e.g.,
pre-implantation genetic diagnosis remains prohibited in countries such
as Austria), and that access to clinical analysis of genes or genomes for
particular purposes depends on the speciic legal and regulatory pro-
visions pertaining to cost reimbursement in a given country, region or
sometimes even institution. In sum, a right to know one’s genome –
understood as being able to have it analysed in a clinical context – has
been acknowledged and practised for a long time, although it has not
been universal and absolute.
A closely related, yet different instance of ‘knowing’ one’s genome
(Table 7.2, 2) would be to have it analysed by a commercial provider
and without the involvement of a clinician. This means that test takers
receive the analysed and interpreted data directly from the test pro-
vider, for example in the format of personalised disease risk calculations
(such as those shown in Table 7.1). This instance thus relects exactly
the scenario of the ‘pure’ DTC model, where genetic information can
be ordered, paid for and received by the test taker directly from the
provider.
A further instance (Table 7.2, 3) pertains to accessing the raw data
of one’s genome, that is, the data from the device used for analysis (i.e.
the sequencer, the SNP-genotyping device, etc.). ‘Raw data’ refers to the
data before they are ‘cleaned’ (e.g., checked for mistakes), analysed and
interpreted.
A number of further scenarios transcend the meaning of ‘knowing’
one’s genome in the strict sense of the word. They extend to not only
learning genomic information but also storing and sharing it: Scenario 4
in Table 7.2 pertains to users who download and store raw data and/or
interpreted data and information, and thus move these data or informa-
tion into their personal domain, rendering them more easily re-analysa-
ble and sharable. Scenarios 5 to7 pertain to sharing data or information
with biological relatives (i.e. people for whom the information received
by the test taker could be relevant as well), to sharing data with a wider
104 Barbara Prainsack

group of researchers than those who carried out the analysis, and to put-
ting data and/or information in the public domain.

What does it mean to have a ‘right’ to know one’s genome?

The inal question to explore before we can look at arguments in favour
of, or against, a right to know one’s genome is that of the meaning of
‘rights’ in this context. Should ‘right’ be understood as a negative right,
that is, as a person’s right not to be prevented from knowing her or his
genome (in any or all the ways discussed above)? Or should it be seen
as the positive right of a person to obtain knowledge of her or his genome, if
necessary also at the cost of others?
The following section will discuss these questions for each of the dif-
ferent scenarios of ‘knowing’ one’s genome distinguished above. A inal
section will then address the question of whether there should be a right
not to know one’s genome.

Arguments in favour of the right to know your genome

Ruth Chadwick referred to ‘at least four concepts in the right to know/
right not to know debate: autonomy, conidentiality, privacy and solidar-
ity’ (Chadwick 1997: 13). Autonomy plays an obvious role here, as a per-
son’s articulation that she or he wants to know something is typically an
expression of her or his autonomy. Chadwick points out that conidenti-
ality and privacy play important roles in helping to draw the line between
cases where third parties (e.g., biological relatives) may have a legitimate
right to demand access to information about somebody else’s genetic
constitution, and cases where such access should not be granted.
In this chapter, I focus on the right of a person to know her or his own
genome. I do not discuss the claim of other people to access that person’s
genomic information. Nevertheless, privacy and conidentiality remain
indispensible concepts, because breaches of privacy and conidentiality
are among the risks that need to be considered as potential unintended
consequences of a person’s right to know her or his own genome as well.
Ruth Chadwick saw the right to know one’s own genetic constitution
as relatively unproblematic ‘because it is the least different from other
areas of medicine and raises similar issues to claims of right to knowledge
about one’s medical condition, based on principles of autonomy and
self-determination’ (Chadwick 1997: 14). This reasoning is still applic-
able today. In contrast to 1997, however, when genetic analyses are car-
ried out today, the test often discloses information beyond the question
for which testing was initiated. For example, the parents of a child with
 DIY genetics 105

learning disabilities could learn that the child is also at increased risk of
breast cancer. The issue of such ‘incidental indings’ (Green et al. 2013)
raises important questions about what kinds of such indings should be
communicated to test takers, by whom, and who should make the deci-
sion. For the arguments developed in this chapter, this means that the
decision to undergo testing has farther-reaching consequences than it did
in the past, highlighting the need for adequate information and relection
preceding and accompanying the testing process.
Furthermore, genetic data today are embedded in digital infrastruc-
tures that regularly render data and information portable across the
domains of different actors and institutions, so the scenarios inherent in
‘knowing’ one’s genome have widened: we no longer receive information
exclusively in the context of a conversation with our physician or genetic
counsellor, perhaps accompanied by drawings or print-outs reminding us
of some core igures and numbers. Nowadays – as Table 7.2 shows – we
can also obtain genomic information in the form of raw data, in the form
of interactive web-based visualisations of genetic risk calculations, and
in some cases, entirely without the involvement of clinical experts. This
opens up new options for test takers: we can run independent analyses
on our raw data; we can make sense of the data with the help of online
tools (e.g., http://evidence.personalgenomes.org/about); we can share
our genetic and genomic information with others; or make it accessible
for research (Lunshof et al. 2014). Inherent in these practices are a num-
ber of risks, such as the risk of a breach of privacy and conidentiality
(e.g., unauthorised access to data stored online), the risk of causing dis-
tress to others by what we decide to do with our own genetic information
(e.g., making it publicly available), or regretting our decisions when it is
too late to prevent their consequences. Thus, the answer to our question
of whether there should be a right to know one’s own genome in each
scenario listed in Table 7.2 should be guided by who would be affected
by such a right.
In the irst scenario – a person having her genome analysed in a clin-
ical context – it is primarily the test taker who is affected by the conse-
quences of this decision, assuming that all clinical safeguards are in place,
and data and information are safely stored in the clinical realm and not
given in bulk to the test taker. In this scenario, the risk of unauthorised
access is very low. If the test taker has monozygotic siblings, however,
or if the analysis discloses genetic information with signiicant clinical
relevance for other biological relatives, then the question arises whether
these relatives should be able to partake in the original testing decision.
These relatives may want the test taker to refrain from having the test
so that they can avoid receiving information that is, at least partially,
106 Barbara Prainsack

applicable to them. I argue that the interest of test takers in having their
genome analysed outweighs the interest of others in avoiding learning
information against their will. An important reason for this is that if a
person is referred to genetic testing in a clinical context, there is typically
a health concern underlying this. Addressing this health concern must
be considered more important than protecting other people from receiv-
ing unwanted information. Moreover, while for the person wanting to
undergo genetic testing there is no other way to know her or his genome
than having it analysed, for those not wanting to receive certain kinds of
information, there are ways to prevent this. Even though these ways may
not always be effective (e.g., if the test taker promises her or his twin or
relative not to share the test results, but the test result can be inferred
from the test taker’s actions following the test), the interest of the per-
son wanting to undergo clinical genetic testing to address a medically
relevant question weighs more heavily than any interest of other parties.
Thus, for scenario 1 (Table 7.2), I argue that there should indeed be a
right to know one’s own genome. This corresponds with current practice
in countries that can afford genetic testing in the clinic.
But can we apply the same reasoning also to scenario 2, namely to a
person’s right to have her genome analysed by a commercial provider?
In order to answer this question, we need to ask what the relevant diffe-
rence between clinical genetic testing and commercial genetic testing is
in terms of risks and beneits for the test taker and any other poten-
tially affected parties. The main difference here is arguably the limited
involvement of clinical experts in the context of commercial genetic
testing. As mentioned above, while in some online testing procedures
test takers need to order the test via their physicians and also receive
results through them, in other instances clinicians are not involved in
the process at all. In the latter scenario test takers thus rely on the infor-
mation provided to them by the testing service (see Table 7.1). While
many online genetics services place great emphasis on easy accessibility
and comprehensiveness of information (i.e. they tell users how results
are calculated, what markers are used for testing, and how genetic risks
should be understood; see, for example, 23andme.com), most results of
genetic tests are probabilistic.2 Some authors (e.g., Howard and Borry
2012) are concerned that lay people struggle to understand probabilistic

2
This is the case because at the time of writing this chapter, many tests do not involve the
sequencing of entire genes but only look at small areas on the genome that have been
found to correlate with certain health- or disease-related phenotypes (causal pathways
are often unknown). Moreover, in the context of complex diseases – i.e. those that are
caused by a complex interplay of genetic and non-genetic factors – any risk calculation
based on genetic factors alone is necessarily probabilistic.
 DIY genetics 107

information without the help of a clinician. If we accepted this assump-

tion, then this would mean that both test takers, and their biological rela-
tives – if test takers shared test results with them – would be at greater
risk if they received test results from commercial providers than if they
received them within a clinical setting. Moreover, commercial testing
services often disclose information that is not clinically actionable (e.g.,
genetic risks for diseases for which no effective preventive measures or
treatments are available; see also Table 7.1), or even medically irrelevant;
there is no consensus on whether access to this additional information is
an advantage or an additional risk.
In conclusion, assuming again that an expression of a person’s desire
to have her or his genome analysed by a commercial provider – irrespect-
ive of whether or not there is a medical question motivating this desire –
is typically an expression of that person’s autonomy, the person should
have a right to do as she or he wishes, unless there is a valid reason to pre-
vent the person from doing so. Such valid reasons could be (i) the need
to protect the person from herself or himself, or (ii) the need to protect
others from unwanted information. With respect to scenario (i), there
is no compelling evidence that customers of commercial genetic test-
ing services are negatively affected by receiving test results without the
involvement of a clinician (for an overview, see Saukko 2013). Moreover,
some authors, including myself, have argued that in order to understand
why people take such tests, we need to extend our concept of utility from
clinical utility in the strict sense of the word to personal and social utility
(Prainsack and Vayena 2013; Vayena et al. 2012). Such personal or social
utility can include people beneiting from learning about the genetic fac-
tors contributing to health and disease; sharing potentially meaningful
or relevant information with others, or ‘only’ inding their engagement
with online platforms entertaining. Such wider utility of genomic infor-
mation has only begun to be explored. At this point, however, no com-
pelling arguments exist to justify the need to protect people seeking to
have their genome analysed by a commercial provider from themselves
because of the negative consequences that this knowledge would have for
them, because any such negative consequences could very well be bal-
anced by beneits. It is likely that the balance in practice will vary from
person to person.
Another risk inherent in genetic testing outside the clinic comes from
the fact that policies on data protection, privacy and data sharing out-
side the remit of clinical guidelines vary greatly (Kang et al. 2012). In
the early days of online genome testing, concerns focused on databases
in the commercial domain being hacked or leaked (e.g., Gurwitz and
Bregman-Eschet 2009). Since then, our attention has shifted towards
108 Barbara Prainsack

the business models of some of these services, which regularly include

selling (anonymised) data to other commercial partners (see Prainsack,
2014). Because not all test takers read the small print of the terms of
service, it can be assumed that many users ‘consent’ to their data being
shared, and/or transferred to the ownership of the service, without their
being aware of it. Is this, however, a suficient reason to conclude that
people wanting to undergo commercial testing need to be protected from
themselves? This would be a rather drastic step to take, considering how
many other practices we engage in on a daily basis without understating
the possible consequences. What needs to be emphasised, however, is
the need to raise awareness of the possibility of such unintended conse-
quences and provide incentives to online genetic testing providers to be
proactive in communicating their data protection and data sharing pol-
icies to potential users. One such unintended consequence may be the
fact that by allowing commercial genetic testing companies to use our
data, we are inadvertently creating value for them (see also Parry 2013;
Prainsack, 2014).
With regard to family members not wanting test results to be shared
with them, such concerns should be taken very seriously, because they
are often not a priori outweighed by a medical reason for the test taker
wanting to undergo testing. It would certainly be desirable for test takers
to be encouraged to discuss – wherever reasonable and meaningful – with
biological relatives and other family members what unintended conse-
quences their test could generate, and how these could be avoided.
Based on the reasoning presented so far, our answer also to the ques-
tion in scenario 3 (Table 7.2) – whether a person should have a right
to access the raw data representing her or his own genome – would be
afirmative. Again, the articulation of a person’s desire to do this would
be seen as an expression of her autonomy, and any other person’s inter-
est in preventing that person from doing so, either out of commercial
interest or a biological relative seeking to protect herself from receiving
unwanted information in the process, weighs less heavily than the test
taker’s interest in accessing her or his raw data. (Note that this applies
to situations in which the analysis has already been carried out; the ques-
tion whether or not a person should have her or his genome analysed
in the irst place is a different one, see above.) At present, people regu-
larly waive the right to access their raw data when they consent to gen-
ome analysis, both in the clinical and in the commercial domains. (The
waiver is often included in the consent; i.e. it would not be possible to
participate without waiving any rights to accessing raw data.) This is a
rather unfortunate scenario. Unless there are compelling reasons for an
exception, people should have the right to access the raw data of their
 DIY genetics 109

own genome. An important example for an exception would be signii-

cant costs for providing access to raw data in the case of publicly funded
biobanks (see Prainsack and Buyx 2013).
Scenario 4 in Table 7.2 pertains to a test taker’s right to download both
raw data and the interpreted information (in any form provided by the
testing service). This means that test takers would not only take home
a print-out of their results, but they could store the results, and the raw
data, on their own computer or elsewhere in their personal domains.
This enables test takers to have their data re-analysed or reinterpreted
by other experts, to run their own analyses (e.g., with the help of online
tools that are freely available), or to integrate their genome data with
other clinical and non-clinical datasets (e.g., by uploading them to per-
sonal or shared health data repositories). Current policies of genetic
testing services, both clinical and commercial, vary greatly with respect
to granting users access to raw data. Reasons for this range from com-
mercial interests to paternalistic motivations. Regarding the latter, one
rationale is that enabling test takers to store data in their own domains
increases the risks of data loss or unauthorised access; even if employ-
ers or insurance companies would not dare (or care) to do this, vengeful
ex-partners or angy neighbours could. Again, here, we can contend that
people already store sensitive data in their personal domains, such as
personal banking details and other personal information that could have
detrimental effects on the owner when stolen. There is no convincing
reason why genomic data should be treated differently from other sensi-
tive data stored in the user’s personal domain. Thus, granting people the
right to download and store data and information obtained from the ana-
lysis of their own genome, whether in the clinic or outside, while at the
same time encouraging them to consider any unintended consequences
that this may have, seems the best solution (Lunshof et al. 2014). (That
people have the right to access raw data does not, of course, preclude the
possibility that they willingly waive this right, e.g. to help contain costs in
the case of publicly funded biobanks.)
Scenarios 5–7 in Table 7.2 describe different practices of sharing gen-
omic data: with biological relatives (scenario 5), with researchers other
than those involved in the initial analysis (scenario 6), and with the gen-
eral public, by, for example, making the data or information available
online (scenario 7). What needs to be balanced in the scenario of sharing
information with biological relatives – thus, with people to whom the
test results could partially apply – are the interests of those who want
to share this information with the interests of those who do not want
to receive it. I have argued above that the interests of those who do not
want to learn the test results of a biological relative are outweighed by the
110 Barbara Prainsack

interests of the test taker – when it comes to the question of whether the
person should be allowed to take the test in the irst place. The question
concerning us here is different: what we need to consider is whether or
not person A – who has already taken the test – should have a right to
share her or his results with a biological relative, person B. The answer
to this, based on the lines of reasoning introduced above, should again
be a positive one. Where B does not want to receive this information,
however, A should be encouraged to respect B’s decision. This is the case
because B’s interest in not being told A’s test results explicitly outweighs
A’s interest in sharing them with B, even if B could clearly beneit from
being told (e.g., if A learned that she or he was affected by a genetic
disease that runs in families and there are measures for prevention or
treatment available, so that B would beneit from taking the test her- or
himself), or if A could beneit personally from telling B. In other words,
ethically, in this instance, B’s autonomous decision to avoid being given
information (B’s right not to know, see below) weighs heavier than A’s
right to share this information. There are reasons, however, why this
ethical situation should not be translated into a right on the side of B:
because it cannot be avoided in all cases that B can infer A’s test results
through actions that A may take in response to her or his test results, it
is important that such an instance would not represent a breach of any
‘right not to know’ on the side of B. Thus, while a right not to know one’s
genome should exist vis-à-vis state authorities and their representatives
(including the health-care system), such a right should not exist between
individuals. (This does not mean, of course, that those wanting to share
information about themselves should not be encouraged to respect others’
desire not to know.)
The same line of reasoning applies to scenarios 6 and 7. Both bio-
logical and other relatives may have an interest in preventing test tak-
ers from sharing their data and/or results with other researchers or
with the general public, which could, in the case of unauthorised rei-
dentiication, also impact negatively on the test takers’ families or rela-
tives. Those wanting to share their genome data in this manner should
be encouraged to take concerns about unintended consequences for
themselves and for others very seriously. Ultimately, however, a per-
son’s autonomous decision to share her or his own data in particular
ways deserves greater protection than anybody else’s interests, even
those of identical twins or multiples (to whom their twin’s personal
genomic information typically applies in full). If we restricted the
right of monozygotic twins and multiples to share their own genomic
information due to the fact that this information also applies to some-
body else, this would in effect discriminate against identical twins or
 DIY genetics 111

multiples on the basis of biological characteristics. Anybody providing

genome analysis to monozygotic siblings, and anybody receiving their
genomic data or information, however, should ask the test taker to
consider discussing this decision with her or his twin or multiple prior
to testing or sharing.
In the inal scenario (Table 7.2, 7), the sharing of one’s genomic
data or information with the general public, by, for example, depositing
them in a public repository or even making data accessible online, those
intending to do this should be encouraged (by the sites or organisations
prompting such information) to consider potential negative inancial or
employment-related consequences in particular. Risk self-assessments
that projects such as the Personal Genome Project at Harvard Medical
School ask their volunteers to carry out before being able to register
are examples for practical solutions to this challenge (see www.personal
genomes.org).
In sum, for each of the seven scenarios discussed in Table 7.2, there
are no compelling reasons to deny or limit people’s right to ‘know’ (and
share) their own genome, although in some instances, those analysing or
processing genomic data and information should ensure that test takers
consider possible unintended consequences for themselves or others.
Now that we have established that overall, a right to ‘know’ one’s
genome should exist, should we also claim that a person’s right to know
her or his genome should be understood as a positive right, requiring
that resources are made available for her or him to undergo testing if
these are not covered by the person’s health insurance, and if the person
is not able to pay for it out-of-pocket? I argue that the presence of a clear
medical indication should be the separation line here. The analysis and
interpretation, and, if applicable, the formulation of preventive or ther-
apeutic strategies following from this, incurs considerable costs for soci-
ety. In cases where there is an immediate medical reason, imposing these
costs on health-care systems seems justiied; in other instances, although
people should be free to obtain, store and share data and information
about their own genome, they should not be able to claim the costs for
doing so from shared resources.

The right not to know one’s genome, and ‘the right to be

forgotten’
When discussing the right not to know in 1997, Ruth Chadwick pointed
out that such discussions become pertinent when other people or insti-
tutions claim access to information that the individual does not know
herself (Chadwick 1997: 17). Chadwick gave the example of identical
112 Barbara Prainsack

twins, of whom one wanted to undergo a genetic test for something that
the other twin did not want to know about. Another example could be
an employer asking for information about an employee’s genetic pre-
disposition to developing complications resulting from handling certain
materials. If the employee did not have this information and voiced the
desire not to obtain it, should she or he be able to claim a right not
to know? If so, this would most likely also prevent the employer from
obtaining this information, because otherwise, the employee could infer
the content of the information from actions that the employer takes
(or not) as a result of learning the employee’s test results (for example,
denying a permanent contract, denying a promotion, or refusing to let
the employee work in circumstances that are particularly risky for her
or him).
Arguments in favour of a right not to know are sometimes based on
the conclusion that arguments supporting a right to know are not sufi-
ciently convincing. A frequent argument to the latter effect is that genetic
information on complex traits, because of its probabilistic character, is
not very useful to test takers. Chadwick dismissed any claims to a right
not to know based on this reasoning because ‘whether or not people do
actually use information in particular ways cannot by itself determine
whether they have a right to it’ (Chadwick 1997: 17). I agree with this
stance and argue that it should also be applied to arguments that gen-
etic knowledge can be confusing or distressing for people. The fear that
some people may get distressed when learning their genetic information
should not be used to prevent those who decide to do so from obtaining
such information. Thus, while there may be valid reasons in favour of a
right not to know one’s genetic information, they cannot be reasonably
inferred from any absence of compelling arguments in favour of a right
to know.
Valid concerns include considerations about individual autonomy (see
Chadwick 1997: 19–20). Just as a person’s articulation of wanting to
know her or his genome is typically an expression of autonomy, such
is the articulation of not wanting to know it. It is important to respect
such autonomous decisions of individuals vis-à-vis authorities and those
representing them. Thus, people should have a right not to know infor-
mation about their genome, and be able to enforce it, in interaction with
institutions such as their employers, insurers or the health-care system.
They should not, however, have a right not to know towards other indi-
viduals who act qua individuals, not as representatives of institutions.
The paradigmatic scenario where this would become relevant in prac-
tice would be people disclosing information about themselves that par-
tially – or, in the case of monozygotic siblings, also fully – applies to
 DIY genetics 113

others.3 Establishing a right not to know information pertaining to one’s

genome that could be enforced vis-à-vis such individuals would in effect
restrict one of the things that make us human, namely communication.
Communication is both verbal and non-verbal, and the scenario that A
unintentionally ‘communicates’ information to B against B’s will cannot
be avoided entirely. Also for this reason – to protect A from legal conse-
quences in this situation – it is important not to establish a right not to
know intra individuals.

Conclusion
This chapter has addressed the question of whether or not there should
be a right to know one’s own genome. My point of departure has been
the state of the debate as represented in the irst edition of The Right to
Know and the Right Not to Know (Chadwick et al. 1997). While the main
lines of reasoning represented in this volume are largely still applicable
today, an important difference now is that genomic data are embedded
in multi-level, (relatively) easy access digital infrastructures. While this
represents a range of new opportunities for test takers, it also brings
along new challenges, such as issues related to data protection.
I have argued that for this purpose, a broad deinition of the term
genome, namely one that includes representations of any or all parts
of a person’s genome, would be the most fruitful. I have then dis-
tinguished between seven manifestations of ‘knowing’ your genome,
some of which already include putting such information to use (e.g.,
by sharing it with others). For each case individually I have suggested
that people should have a right to ‘know’ their genomes in this spe-
ciic manner, although potential test takers should be encouraged to
consider the unintended consequences that this could have for them,
and for others. This should be done preferably in dialogue with other
potentially affected individuals. Those analysing and processing gen-
omic information – whether in the clinic or outside – should prompt
test takers to do this.
With respect to a right not to know, I have concluded that individuals
should have such a right vis-à-vis authorities. Such a right should not

3
People should, of course, be able to prevent others from having their personal genome
analysed and telling them against their will (i.e. B should be able to prevent A from ana-
lysing B’s genome and telling B the results against B’s will). Today, however, this is a
moot point, because genetic testing services do not analyse results that were submitted
by another person (unless samples were submitted by the parent or legal guardian of a
child). If A managed to bypass the safeguards of testing service providers in this respect,
then A would be breaking the law and could be held accountable by legal means.
114 Barbara Prainsack

exist, however, vis-à-vis other individuals when it comes to disclosing

relevant information that also pertains to others when communicating
their own genomic information.4

Acknowledgements
I am grateful to Jeantine Lunshof and to Shiri Shkedi-Raid for helpful
comments on this manuscript, and to Mairi Levitt and Ruth Chadwick
for being such wonderful editors.

References
Chadwick, R. 1997. ‘The philosophy of the right to know and the right not to
know’, in R. Chadwick, M. Levitt, and D. Shickle (eds.) The Right to Know
and the Right Not to Know. Aldershot: Avebury, pp. 13–22.
Chadwick, R., Levitt, M. and Shickle, D. (eds.) 1997. The Right to Know and the
Right Not to Know. Aldershot: Avebury.
Green, Robert C., Berg, Jonathan S., Grody, Wayne W., Kalia, Sarah S., Korf ,
Bruce R., Martin, Christa L., McGuire, Amy L., Nussbaum, Robert L.,
O’Daniel, Julianne M., Ormond, Kelly E., Rehm, Heidi L., Watson, Michael
S., Williams, Marc S. and Biesecker, Leslie G. 2013. ‘ACMG recommen-
dations for reporting incidental indings in clinical exome and genome
sequencing’, Genetics in Medicine 15(7): 565–74.
Gurwitz, D. and Bregman-Eschet, Y. 2009. ‘Personal genomics services: Whose
genomes?’, European Journal of Human Genetics 17(7): 883–9.
Howard, H. C. and Borry, P. 2012. ‘Is there a doctor in the house? The presence
of physicians in the direct-to-consumer genetic testing context’, Journal of
Community Genetics 3(2): 259–83.
Kang, J., Shilton, K., Estrin D., Burke K. and Hansen M. 2012. ‘Self-surveillance
privacy’, Iowa Law Review 97: 809–47.
Lunshof , J. E., Church, G. M., and Prainsack, B. 2014. ‘Raw personal data: pro-
viding access’, Science 343: 373–4.
Parry, B. 2013. ‘Knowing Mycellf TM: Personalized medicine and the econo-
mization of prospective knowledge about bodily fate’, in P. Meusburger
et al. (eds.) Knowledge and the Economy. Dordrecht: Springer, pp. 157–71.
Prainsack, B. 2014. ‘Understanding participation: The “citizen science” of
genetics’, in B. Prainsack, S. Schicktanz and G. Werner-Felmayer (eds.),
Genetics as Social Practice. Farnham: Ashgate, pp. 147–64.
Prainsack, B. and Buyx, A. 2013. ‘A solidarity-based approach to the governance
of research biobanks’, Medical Law Review 21(1): 71–91.

4
While elsewhere I have argued that solidarity should be an important principle in organ-
ising the generation, processing and sharing of genomic data (Prainsack and Buyx 2013),
I consider solidarity less useful in the context of weighting the conlicting interests of
biological relatives. We can assume that what motivates them to help each other, ight
each other or take seriously each other’s concerns are regularly bonds stronger than
solidarity.
 DIY genetics 115

Prainsack, B. and Vayena, E. 2013 ‘Beyond the clinic: “Direct-to-consumer” gen-

omic proiling services and pharmacogenomics’, Pharmacogenomics 14(4):
403–12.
Saukko, P. 2013. ‘State of play in direct-to-consumer genetic testing for lifestyle-
related diseases: Market, marketing content, user experiences and regula-
tion’, Proceedings of the Nutrition Society 72(1): 53–60.
Topol, E. 2012. The Creative Destruction of Medicine: How the digital revolution will
create better health care. New York: Basic Books.
Vayena, E., Gourma, E., Streuli, J., Hafe, E. and Prainsack, B. 2012. ‘Early users
of direct-to-consumer genomics in Switzerland’, Public Health Genomics
15(96): 352–62.
Vorhaus, D. 2010. ‘The past, present and future of DTC genetic testing reg-
ulation’, Genomics Law Report (5 August 2010). Available at: www.
genomicslawreport.com/index.php/2010/08/05/the-past-present-and-
future-of-dtc-genetic-testing-regulation/ (accessed 19 July 2013).
8 Genomics, inconvenient truths and
accountability

Jeantine Lunshof and Ruth Chadwick

Recently, genetics and genomics have become consumer products, mov-

ing beyond the research lab and outside the clinic into the daily life of
modern citizens. Direct-to-consumer (DTC) marketed genetic tests are
probably the best-known example, the ‘products’ being actually lab ser-
vices, as Barbara Prainsack discusses in Chapter 7 of this volume. DNA-
based genealogy tests to ind out more about one’s ancestry were among
the irst on the market.1 Now that technology developments have led
to the increasing availability of sophisticated but affordable tests, ques-
tions concerning genomics applications arise in a new context for indi-
viduals and families, and at a larger scale for communities and societies.
While individual-centred, clinical and non-clinical use of genetic testing
is booming, other areas of genetic research are also changing, as can be
seen in, for example, human anthropology and population genetics. New
insights and, in particular, new technologies in genomic science are lever-
aging the broad ield of biomedicine and they imply changed patterns of
accountability in research. Therefore, established normative frameworks
that refer to classical (human) genetics require careful inspection and
they may need to be adjusted in order to be applicable to the new know-
ledge from the genomic sciences.2
We aim to contribute to that revision by reviewing some classic cases
that challenge our thinking about ethics and accountability in the sci-
ences in various disciplines.
We will examine the interaction between science, ethics and account-
ability in the ield of genomics research and present several cases that high-
light unresolved issues that can arise in the context of genomics research
at the community and population level. Research indings concerning

1
Family Tree DNA is known as the irst service provider on the market. See http://
en.wikipedia.org/wiki/Family_Tree_DNA (accessed 29 October 2013).
2
The genomic sciences include genetics. For reasons of readability we will further use
‘genomics’ in this text and use ‘genetics’ only if we speciically refer to this narrower
ield.

116
 Genomics, inconvenient truths and accountability 117

ancestry may heavily impact core concepts of identity, for individuals as

well as for communities (Elliot and Brodwin 2002; Wolinsky 2006).
This does raise the question of whether groups – regardless of the deci-
sions of individual group members – have the right to decline to learn the
outcomes of scientiic research. Such a right would be dificult to protect
upon publication, and may at the extreme lead to calls for prohibiting the
conduct of particular population-level studies that may convey unsoli-
cited and unwanted insights.
We will analyse the accountability of scientists in the light of changing
practices in the application of genomics research and the associated set of
moral obligations. To that end, we irst describe our view on the norma-
tive structure of accountability, in particular in the context of scientiic
research. Second, we present several examples of disputed or unwelcome
indings in population genetics or ancestry studies from the past decades
and, thirdly, we analyse the case of population-level research among the
Native American Havasupai community, to illustrate the changing pat-
terns of accountability in genomics research in a distinct population, over a
long time. We will ask what, if any, speciic conclusions can be drawn from
this case, and what wider insights we can take from it about the responsible
conduct of research and the different ways of sharing information.

Science, ethics and accountability

What function does accountability have in the context of science today?
And how does it relate to ethics?
In general, accountability has a crucial function in maintaining the
standards of a discipline or a profession. Systems of accountability, with
structures that codify the rules for both giving an account and holding
to account, are in place in organizations of almost every profession (in
the wide sense of the word), be it of lawyers, plumbers, physicians or
car mechanics. In the academic world, rules for accountability can be
found at all levels of the organization: the university itself, the institutes,
the research groups and labs, as well as in education and within student
organizations.
Internal accountability, that is the maintenance of standards within the
profession itself, can be distinguished from external accountability, where
professionals individually or collectively have to render account to public
bodies or institutions or to speciic other professions. The latter, external
accountability at the interface of disciplines, professions and society is
operationalized, for example, by funding bodies, science policy organiza-
tions and governmental research oversight bodies and also, obviously, by
inancial accountants.
118 Jeantine Lunshof and Ruth Chadwick

Examples of internal accountability in the area of science include sci-

entiic review of research proposals and the process of peer review of
publications. In many professions, certiication of continuing education,
professional licensing and disciplinary systems are internal measures for
quality assurance that set benchmarks for accountability. This has led,
however, to the rise of the audit agenda that, according to O’Neill, ‘seeks
to improve accountability by ever-more intensive monitoring, inspection
and audit of performance’ (O’Neill 2002, p. 131). The improvement of
accountability entails an increase of trustworthiness, but this comes at
the price of a decrease of trust, a result which can undermine the very
raison d’être of the profession.
Ethics review bodies represent a speciic system of accountability,
as by deinition they hold researchers to account for the fulilment of
moral obligations in the design and conduct of research. In biomedi-
cine and in behavioural research, ethics review has become a ubiquitous
phenomenon over the past decades. The system has been implemented
in a variety of forms that often exist next to one another and thereby
set standards that may be in tension or even contradictory, resulting
in rather unclear accountability structures. Moreover, we should ask
ourselves to what extent institutionalized ethics review has turned into
an intrusive bureaucracy. This is another example of the ‘audit cul-
ture’ analysed by O’Neill, which was originally intended to improve
accountability and secure trustworthiness (O’Neill 2002). In fact, how-
ever, although the audit culture was developed to restore trust, ‘its
spread actually creates the very distrust it is meant to address’ (Power
1994, p. 10).

Accountability in science
External and internal accountability as described above are mostly pro-
cedural, but also relate to the concept of the ‘good’ that science pursues
(Chadwick 2005). However, added to that, there is a type of account-
ability intrinsic to the scientiic endeavour itself. In science, apart from
the procedures, there is the key issue of scientiic content. Thorny issues
in scientiic accountability arise about the maintenance of standards
that includes the research question and the scientiic method, as well
as the outcomes. There is a good that is internal to science and, accord-
ing to Serageldin, it includes rationality, creativity, the search for truth,
adherence to codes of behaviour and, as he calls it, a certain construct-
ive subversiveness (Serageldin 2008). Scientists can be assumed to have
the obligation of doing good science, they can be held to account for
the way in which they conduct research and for the quality assurance of
 Genomics, inconvenient truths and accountability 119

the outcomes according to the standards of the profession. The recent

lood of published misconduct cases shows that the procedural control
mechanisms do work, at least ex post (Investigation Committee Bell Labs
2002; Institute of Medicine 2012; Levelt, Noort and Drenth Committees
2012). But what are the standards for scientiic content, and to whom are
scientists accountable regarding the content of their work?
There is much discussion about method, in particular in the genomic
sciences. Here, we want to look in particular at the object and the out-
comes of research. Research indings and conclusions usually entail some
truth claim. Also negative results of studies – where the hypothesis that the
study set out to test turns out to be wrong – can be reported as a true con-
clusion about the absence of evidence. Such negative outcomes tend to be
under-reported (Fanelli 2012). There can be, however, some very ‘incon-
venient truths’ – from positive as well as negative outcomes – that may
bring scientists into conlict not only with their sponsors and oversight
bodies, but potentially also with their research subjects and their commu-
nities, or even society at large. The classic case of such an inconvenient
truth is of course Galileo’s heliocentrism, based on the earlier indings of
Copernicus, the truth of which was conirmed by Galileo through system-
atic astronomical observations (Galilei 2001). Sticking to his conviction
about the scientiic fact of the planet Earth orbiting the sun, in front of
the Inquisition and the head of the Roman Catholic Church, he ended up
in lifelong house arrest.
On the other hand, deliberate denial of scientiic truth for political
or religious purposes is not conined to the past. Recent examples are
the AIDS denial and the creationism controversy. The AIDS denial by
president Mbeki of South Africa led to an estimated loss of more than
330,000 lives between 2000 and 2005 (Chigwedere et al. 2008). Mbeki
denied that HIV was the cause of AIDS and blocked the provision of anti-
retroviral drugs to the South African population. He rejected the irmly
established consensus of the scientiic community about the causative
role of HIV, and referred to the so-called Duesberg hypothesis, claiming
that the use of recreational drugs and of antiretroviral drugs are causes
of AIDS (Duesberg et al. 2003). Another example, with great public and
individual health impact, is the obstruction of the tobacco industry of
the reporting of outcomes of studies on the risk of cancer – and other
diseases – from environmental tobacco exposure (ETS, ‘second-hand
smoke’) (Ong and Glantz 2000).
Serious conlicts arise when scientiic indings, or particular interpret-
ations of such indings, clash with public policy, as shown in the UK
by the recent ‘Nutt-gate’ affair. David Nutt, a professor of neuropsy-
chopharmacology, was the chairman of the UK Advisory Council on the
120 Jeantine Lunshof and Ruth Chadwick

Misuse of Drugs (ACMD). In 2007 he published an article in The Lancet

purporting to show that alcohol is the most harmful drug, before heroin
and crack cocaine (Nutt et al. 2007). When he later compared the risk of
harm from ecstasy to that of horse riding, he was sacked as chair of the
ACMD (Nutt 2009). As Alan Johnson, the Home Secretary, stated, ‘He
was asked to go because he cannot be both a government adviser and
a campaigner against government policy’ (Guardian Online). In other
words, it was denied that it was the scientiic inding itself that was the
problem. Further research conirmed the overriding harm caused by
alcohol and in 2010 Nutt and his colleagues published a reined ver-
sion of their article of 2007, reaching the same conclusions (Nutt et al.
2010).
A typical example of religiously motivated denial of corroborated sci-
entiic knowledge is ‘creationism’. The anti-evolution ‘Creation science’
movement and its more recent subset of ‘Intelligent Design’ (ID) that are
particularly active in the United States, reject the theory and indings of
evolutionary biology. Originating in the 1920s, the argument about ‘cre-
ation’ or evolution has been ongoing for nearly a century. The current
battle – that has resulted in a considerable number of law suits – is actu-
ally about education policy and the unsuitability of theories grounded
in religious beliefs for the science and biology classroom3 (Scott and
Matzke 2007).
Questioning established knowledge and raising hypotheses as to its fal-
siication are essential features of the scientiic enterprise – and include
questioning scientiic method itself, a discussion that meanwhile has
reached the general media (Ioannidis 2005; Lehrer 2010, p. 52). The
requirement of reproducibility of results is a further key characteristic
(Diamandis 2010). It necessitates sharing information, access to – the
sources of – research data and unrestricted dissemination of indings.
Scientiic inquiry may shake long-held beliefs on any topic in any area,
on seemingly small but very fundamental issues in science itself (Boogerd
et al. 2011), as well as on the big questions in areas as remote as reli-
gion and cultural narrative. The latest developments in the biological
sciences show that we are still sailing in uncharted waters and in par-
ticular the rise of synthetic biology presents us with what appear to be
completely novel questions: we have moved from reading the genome to
writing and editing genomes and are already ‘remaking ourselves and our
world’ (Church and Regis 2012, p. 13). How far applications of molecu-
lar engineering, as, for example, genome editing or the use of synthetic

3
On 3 December 2010 a settlement was reached with a family receiving $475,000 in the
case of Doe et al. v. Mount Vernon City School District Board of Education et al.
 Genomics, inconvenient truths and accountability 121

DNA as a programmable material, challenge our conceptual and norma-

tive frameworks remains to be seen (Mali et al. 2013; Qi et al. 2013).

Genomics, truth and accountability

Genetics and genomics regularly convey unwelcome messages and reveal
inconvenient truths. They can range from non-paternity issues in clas-
sical clinical genetics to revealing information about ancestry and geo-
graphical origin of communities that is perceived as highly disturbing
by the people in question. In both cases, the ethical, social and psycho-
logical implications are non-trivial.
What are the issues of professional and scientiic accountability in this
context? What of truth and truthfulness? In the irst case, the professions
of clinical geneticists and counsellors, well aware of the realities of fam-
ily relationships and of hereditary disease susceptibility, have established
practical guidelines for dealing with such situations. Apart from that,
they are in the role of health-care providers – as physicians or other pro-
fessionals – and it has been argued that the rules for truth-telling in the
patient–physician relationship allow for selective non-disclosure of infor-
mation that, in the eyes of the physician, is assumed to be too disturbing
for patients. It is however questionable whether such a traditional ‘thera-
peutic privilege’ can be justiied at all and maintained in current develop-
ments towards participatory healthcare, in particular also in the context
of DTC (genetic) testing services4 (Prainsack 2011).
The second case, revealing information about ancestry and the origin
of populations, is far more complex. As argued, in the context of sci-
ence and scientiic research, there is no escape from the commitment to
the truth, or at least to truthfulness about the factual conclusions that
we draw, to the best of our knowledge, from the systematic analysis of
empirical indings.
In some cases, empirical evidence of ancestry – geographical, tri-
bal – is actively sought by communities or community leaders (Paritt
2003; Thomas et al. 2000). In the case of the Lemba, the ‘Black Jews of
Southern Africa’, the search for genetic evidence has been tightly con-
nected with the afirmation of religious identity with Judaism. While gen-
etic studies are ongoing, a complex situation exists, as Jewish ancestry
can be highly relevant for the correct diagnosis of – otherwise rare – her-
editary disorders (Ostrer and Skorecki 2013). As noted by Goodman in
his seminal text book:

4
See, e.g.: Society for Participatory Medicine at: www.participatorymedicine.org (accessed
29 October 2013).
122 Jeantine Lunshof and Ruth Chadwick

If one is aflicted with a hereditary disease characteristically observed in Jews, in

most cases, that individual must be a Jew genetically. According to the Halacha
(Jewish Law), however, one is a Jew if one’s mother is Jewish or if one converts to
Judaism according to the requirements of the Law.5
(Goodman 1979, p. 3)

While the Lemba sought for genetic evidence of ancestry and identity,
other people did not want this type of knowledge to be imposed upon
them and conclusions from studies turned out to be detrimental to the
group and to individuals. For example, in the case of the Maori of New
Zealand, population-based studies into particular genetic traits that were
interpreted by the researchers as conirming hypotheses concerning
ancestry and migration as well as causally connected with present-day
culture and behaviour, led to increased stigmatization and tension in
society (Evans 2012; Perbal 2013).
In both cases, the Lemba and the Maori, the genome analysis and
interpretation may have been correct according to the objective criteria
for biological research.
However, considerable harm to the people involved and a loss of trust
in science and scientists may result under certain circumstances from
taking the objectivist approach (Boghossian 2007). We will describe the
genomics research among the people of the Havasupai tribe who live in
the Grand Canyon in Arizona as an example of the major impact of a
neglected clash of cultures.

Genomics research in human populations: the case of the

Havasupai
The story of the Havasupai people about their participation in genetic
research (which ended in April 2010 with return of the samples and a
settlement for damages) has received much attention (Callaway 2010;
Couzin-Frankel 2010; Editorial 2010; Harmon 2010; Vorhaus 2010).
The report of a formal investigation initiated by Arizona State University
(ASU) was published in 2003 (Hart and Sobraske 2003). The principal
investigator of the project, Therese Markow, responded to the publica-
tion in a letter in The New York Times6 (Markow 2010, p. A24).

5
With thanks to Rabbi T. R. Bard, Boston/Newton, MA, for the text book reference and
discussion.
6
In August 2013 the results were published of a study among institutional review board
(IRB) chairs and researchers at National Institutes of Health (NIH)-funded institutions.
This small, qualitative study showed that the Havasupai case did not have a large impact
on the practice of these respondents (Garrison and Cho 2013).
 Genomics, inconvenient truths and accountability 123

The focus of the discussion has been almost entirely on the informed
consent or rather, the alleged lack of consent. That allegation, however,
seems hard to substantiate, as the Havasupai gave so-called broad con-
sent that was not limited to the study of one particular trait in this par-
ticular study. In the following, we will examine the case from a different
viewpoint, highlighting the complex interaction of agents, acts, obliga-
tions, rights and the relationships of accountability.
As a brief description of the case, the people of the Native American
tribe of the Havasupai live in a remote part of the Grand Canyon in
Arizona, USA. The tribe is numerically small, with (in 2010) about
650 members. In 1990, a request from the tribe members for help in
inding the cause of the very high incidence of type 2 diabetes (55% of
Havasupai women and 38% of Havasupai men were affected in 1991
(Dalton 2004)) led to the initiation of a medical genetics research pro-
ject. At that time, an extensive genealogical data set already existed that
had been collected in the course of anthropological research over several
decades, providing an ideal source of background data for the analysis
of genetic variation. The researchers – John Martin, the anthropologist
who had studied the Havasupai for many years, and Therese Markow, a
geneticist – obtained funding from ASU and the National Alliance for
Research on Schizophrenia and Depression (NARSAD) for a study of
genetic variants among the Havasupai. The study participants signed a
broad consent, for the study of ‘the causes of behavioural/medical disor-
ders’, although the initial request from the tribe members was only about
inding a cause of the high incidence of diabetes. The collected samples
and data were used in a multitude of studies, by the initial researchers as
well as by others with whom data were shared over the years (Hart and
Sobraske 2003, pp.63–137). One early publication reported on human
leukocyte antigen (HLA) polymorphism among the Havasupai. In theory
this could have shed a light on the diabetes incidence, as previously found
among the Native American Pima tribe, but the results were inconclusive
(Markow et al. 1993). The researchers reported on their efforts towards
diabetes control in a brief contribution in The Lancet (Zuerlein et al.
1991). A further early publication by Markow and Martin focused on the
effects of inbreeding on so-called developmental stability (Markow and
Martin 1993). Only many years later, in 2003, the Havasupai community
became aware by accident of the ways in which their samples and data
had been used over the years. Meanwhile there had been publications
on, among other topics, inbreeding and population migration. The latter
research indings contradict the Havasupai’s own beliefs about their ori-
gin and geographical ancestry. In 2004, a lawsuit was iled, claiming over
$50 million in damages for ‘severe harm, extreme distress, and emotional
124 Jeantine Lunshof and Ruth Chadwick

trauma’ (Editorial 2010). In April 2010, ASU agreed in a settlement to

pay $700,000 to 41 members of the Havasupai tribe.
In August 2013, the chain of events, from the original project in 1990
to the publicity surrounding the settlement in 2010, was recounted by
Ricki Lewis in a blog post (Lewis 2013) that elicited many comments,
including several responses by Teresa Markow. A key issue was the clari-
ication about the actual scope of the research and the lack of publi-
cations from the project, taking into account the frequent reference in
the media to schizophrenia studies performed on the Havasupai or their
data. According to Markow, with the techniques available at the time
of the study, no suficient and appropriate variants could be found to
perform any association studies at all, neither for diabetes nor for other
disorders. In the end, only clinical and educational help to reduce the
burden of diabetes could be provided to the Havasupai, as reported by
the team (Zuerlein et al. 1991). Yet, there is much contradictory infor-
mation on the actual course of the research and many questions remain
open in spite of recent in-depth analysis (Van Assche et al. 2013).

Beyond consent: moral matters for indigenous people

The case of the research among the Havasupai raises many questions. As
already indicated, much attention has been paid to the apparent prob-
lems with the original informed consent from 1990. The broad scope of
it, in spite of the fairly narrow and concrete medical question concern-
ing the Havasupai, the failed communication about the consent implica-
tions, and the fact that for data sharing as well as for later new studies
by the ASU group no reconsent was sought, suggest a lack of appro-
priate attention to detail in the conduct of research, to say the least.
Strategies for improving the consent process in this type of research have
been proposed (Boyer et al. 2011; Jacobs et al. 2010; Mello and Wolf
2010). In general, the question of whether or not reconsent for later and/
or other research is necessary is an important matter of ongoing debate.
But the case raises other questions as well, showing some morally rele-
vant matters that by their very nature are beyond consent. First, the use
of speciic terminology by the researchers in their publications – a seem-
ingly minor issue, but with serious consequences. ‘Inbreeding’ originates
from the context of livestock breeding as a means to promote desirable,
and to eliminate not-desired, traits in animals, and was applied from the
mid-19th century onwards by the eugenics movement propagating the
‘improvement’ of humans (Galton 1865). As the title of the early article
by Markow and Martin (1993) shows, the authors unfortunately chose
the technical term ‘inbreeding’ to describe the actual consanguinity
 Genomics, inconvenient truths and accountability 125

among the Havasupai people. After mentioning developmental instabil-

ity ‘in inbred and outbred invertebrates and vertebrates’, the authors
continue to describe the rationale of their research question: ‘reports on
the inluence of inbreeding … in humans have not been consistent. We
have identiied a population, the Havasupai Indians of northern Arizona,
which is uniquely suited to address this question’ (Markow and Martin
1993, p. 389). Arguably few populations would not feel offended.
Apart from that, referring to inbreeding, a Havasupai spokesperson is
quoted as saying: ‘We say, if you do that, a close relative of yours will die’
(Harmon 2010), which suggests that there may be additional confusion
concerning inbreeding and incest.
Careful explanation and use of the scientiically correct term of ‘con-
sanguinity’ might have prevented at least part of the humiliation as per-
ceived by the tribe members.
Second, the more fundamental issue concerns the acceptability for
individuals and communities of empirical evidence that contradicts trad-
itional beliefs and sacred knowledge. By its very nature, this is beyond
what can be a matter of consent. The application of genomics very often
touches upon descent, paternity, ancestry and related issues. This applies
not only to classical hereditary disorders, but with the development of
genomic medicine this is the case for an increasing spectrum of health
and disease traits. As a consequence, certain traditional narratives and
long-held beliefs may appear in a different light. For a community this
may result in considerable so-called ‘dignitary’ harm that, however, is
highly subjective and situation-speciic and may be an unavoidable effect
of scientiic inquiry.7
Further considerations are that communities and populations may
not accept the Western world model of science at all, or that a research
agenda may be perceived – rightly or wrongly – as part of a political
agenda. This may happen in the ield of genomics research, as the history
of the Human Genome Diversity Project (HGDP)8 has shown, but it can
in principle occur in any area of science (Cavalli-Sforza 2005). Current
criticism from representatives of indigenous peoples’ organizations is
directed towards the Genographic Project. The Genographic Ethical
Framework Document states that:
Principal Investigators are required to be (and are) sensitive to the fact that know-
ledge generated by the project may give rise to narrative accounts that function as
an alternative to some traditional accounts of the origin of the cosmos (including

7
On dignitary harm and the example of the Havasupai, see the in-depth analysis by Van
Assche, Gutwirth and Sterckx (2013).
8
See www.hagsc.org/hgdp/ (accessed 21 October 2013).
126 Jeantine Lunshof and Ruth Chadwick

people). All project participants understand that scientiic narratives do not have
priority over other types of narrative – and that Indigenous communities will
determine the extent (if any) to which such narratives might complement their
existing world views.
(The Genographic Project 2013)
While this seems to be a suficient warning in mainstream research
practice, it is deemed inadequate and inappropriate by representatives
of indigenous peoples’ groups (Harry and Kanehe 2005). We have not
addressed these issues here in detail, but these concerns are substan-
tial and, obviously, cannot be resolved through traditional mainstream
models of consent. Through the joint efforts of global organizations of
indigenous peoples new approaches have been developed, notably by the
Free, Prior and Informed Consent Initiative (FPIC), with a broad scope
encompassing rights to land and natural resources and preservation of
cultural identity.9

Science, inconvenient truths and accountability: some

conclusions
We set out to investigate the intricate relationship between science, eth-
ics and accountability against the background of developments in the
genomic sciences.
We looked at the various forms of accountability and the way in
which they function in the scientiic environment and arrived at the
question about accountability for scientiic content – to whom are sci-
entists accountable with respect to the content and outcomes of their
work? Highly inconvenient truths may result from meticulous empir-
ical observation and rigorous theoretical analysis. What to do, if care-
fully derived, robust research indings clash with the deep convictions
and key components of people’s traditional knowledge – in particular
if it concerns vulnerable populations? Can people be expected to con-
sent to the confrontation with ‘enlightenment’? Respect for persons
and populations requires respect for choosing to adhere to tradition
and narrative.
Scientists should adhere to the values of science that, according to
Ismail Serageldin, presuppose ‘freedom to enquire, to challenge, to
think, and to envision the unimagined’ and they may thereby reveal some
inconvenient truths (Serageldin 2008).

9
See www.culturalsurvival.org/consent (accessed 21 October 2013).
 Genomics, inconvenient truths and accountability 127

Acknowledgements
This chapter draws on material that was irst published as Editorial:
Genetic and genomic research – changing patterns of accountability, in
Accountability in Research 2011, 18(3): 121–31. It is reprinted by per-
mission of Taylor & Francis (www.tandfonline.com). Jeantine Lunshof
has received funding from the People Programme (Marie Curie Actions)
of the European Union’s Seventh Framework Programme (FP7/2007–
2013) under REA grant agreement n° 298698.

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Part III

Emerging issues
9 The right to know and the right not to
know in the era of neoliberal biopolitics and
bioeconomy

Henk ten Have

Introduction
With advancing knowledge and information the right to know and the
right not to know are becoming increasingly problematic. Whether or
not we have these rights is debatable as it seems we are more and more
absorbed in processes that make it unavoidable to know. It is even argued
that there is a duty to know, so that whether we like it or not, we are
dictated by knowledge to decide how we wish to apply it. I have earlier
attributed the association between availability and application to the phe-
nomenon of geneticization (Ten Have 1997). This is the socio-cultural
process of interpreting and explaining human beings using the termin-
ology and concepts of genetics, so that not only health and disease but
all human behavior and social interactions are viewed through the prism
of biomolecular technology (Ten Have 2012b). Geneticization has since
then only ampliied its outreach and impact. Many human behaviors
have been associated and ‘explained’ by the existence of a speciic gene.
The well-known discussion on the ‘warrior gene’ attributed to the Maori
in New Zealand is no exception. The occurrence of this gene was used in
a murder case in 2010 to argue for diminished responsibility, and it inlu-
enced the jury’s decision (‘not murder’) (Hagerty 2010). The discovery
of the gambling gene (1996) and adultery gene (2010) have opened up
interesting perspectives for the notion of responsibility. There is even a
search for a genetic origin of human rights (Keane 2010). Medicine in
particular is affected by geneticization. Genes are increasingly consid-
ered as the origin of health and disease. There is only a limited role for
psychological, social and environmental factors since the ultimate causal
factors are genetic. The concept of health is also changing (Torres 2006).
With the possibility of detecting mutations in the genome that might
in the future produce serious diseases, one is only considered healthy
if the genome is healthy. As soon as a mutation is discovered one is no
longer healthy but ‘unhealthy.’ The implication is that as genetic tech-
nologies are multiplying the number of healthy people will decline, and
133
134 Henk ten Have

ultimately, most people will be unhealthy. Health will become excep-

tional and rare with the progress of genetics. In fact, with this logic, the
genetic framework will become inescapable (Stempsey 2006). If our
genetic constitution determines our identity (genetic essentialism) and
if our genetic constitution is causing diseases (genetic reductionism), we
are our diseases. But also, if genes are constitutive of diseases, in fact
all diseases are genetic diseases. A right to know or not to know in this
framework is futile.

Possible obstacles
The inevitable rise of a genetic framework for human existence will
produce a genetic civilization strategy aimed at a particular governance
of human conduct. As I argued earlier, there are two obstacles to the
implementation of such a strategy (Ten Have 1997). First, there is an
increasing need to be selective. The exponential production of data is
self-defeating when distinctions are not made between what is relevant
and what is not. Being inundated with data is paralyzing to any action.
The only response is continuing collection but this makes information
useless unless there are meta-level selection mechanisms. The drive is
to collect information about every citizen in a population, enabling the
National Security Agency (NSA) to assemble Internet data on 75 per-
cent of the US population. To make photocopies of all slow mail distrib-
uted in the country (160 billion pieces last year; Nixon 2013), mimics
the genetic drive to engage in whole genome sequencing of every per-
son. Such genome sequencing is applauded by some bioethicists (Grady
2013). The question of purpose is no longer asked, it is assumed that
more knowledge is obviously always better, just as in the consumer mar-
ket more products seem to generate more choices. The second obstacle
to increasing geneticization is the normativity of medicine (and science,
as I will add now). Medicine is guided by speciic values and norms. It is
not a neutral activity, at least as long as it is primarily regarded as a pro-
fession rather than a business. This normative perspective seems to be on
the wane, particularly in the USA, as medicine comes to be regarded as a
commercial enterprise and care services as its businesses. Therefore both
obstacles are on the way to being removed and the future appears open
to the unlimited application of genetic technologies.
The above conclusion might be misleading. After reviewing the past
decades of bioethical relection, Walters (2012) does not detect any obvi-
ous misuse or catastrophic misapplications of the new genetics.This, how-
ever, does not imply that the whole setting is unchanged. Metaphorically
speaking, one does not ignore the gradual clouding and decrease in vision
 Rights in the era of neoliberal biopolitics and bioeconomy 135

due to a cataract in order to happily avoid retinal ablation. What I would

like to show in this chapter is irst, that genetics is not alone in the driving
seat; it is a very visible component of a wider framework which is often
not analyzed, let alone criticized in mainstream bioethical discourse. The
emphasis on personal autonomy and individual responsibility is in fact
a feature of a dominant ideology that is merely relected in discussions
about genetic knowledge and technology. In other words, geneticization
is a vector of a more encompassing ideology. Arguing that this ideology
is currently under critique in various areas of science will be the pur-
pose of the second part of this chapter. Contemporary discussions about
privacy, public access, patenting and data sharing indicate that efforts to
delineate the public domain are at the heart of deining and demarcating
the speciic normative nature of science and medicine. Its purpose is to
ensure that genetic data will not be managed as mere commodities.

Global context
Today globalization is a major source of bioethical problems. While there
are different interpretations of globalization, the common core of these
interpretations has been identiied as ‘the operation of a dominant mar-
ket-driven logic’ (Kirby 2006, p. 80), shifting policies away from maxi-
mization of public welfare to the promotion of enterprise, innovation
and proitability. This logic changed the nature of state regulation, ‘pri-
oritizing the well-being of market actors over the well-being of citizens’
(Kirby 2006, p. 94). Rules and regulations protecting society and the
environment are weakened in order to promote global market expansion.
A new social hierarchy emerged worldwide placing the integrated at the
top (those who are essential to the maintenance of the economic system),
the precarious in the middle (those who are not essential to the system
and thus disposable) and the excluded at the bottom (the permanently
unemployed) (Cox 2002). More than exploitation, precariousness and
exclusion are characteristics of this new social order of globalization.
Due to increasing risks and lower resilience, people all around the world
but especially in developing countries have diminishing abilities to cope
with threats and challenges.
The impact of globalization has signiicant consequences for bioethics.
Since its emergence in the 1970s it has focused on empowering indi-
viduals. The main challenge was the impact of science and technology,
and the main moral question was how the rational, individual decision
maker would be able to select beneits and avoid harms. The concern
was primarily with the ethical issues raised by new scientiic knowledge
and technological interventions: reproductive medicine, transplantation
136 Henk ten Have

and organ donation, intensive care treatment and, of course, the new
genetics.
However, when confronted with globalization and facing the chal-
lenges of poverty, inequality, environmental degradation, hunger, pan-
demics and organ traficking such a discourse is no longer suficient.
The main challenge for bioethics today is the impact of the neoliberal
market ideology worldwide. The usual discourse must therefore be com-
plemented with a broader framework, for example as provided in the
Universal Declaration on Bioethics and Human Rights, presenting a
wider range of ethical principles going beyond the individual perspective,
including solidarity, care, social responsibility and respect for human
vulnerability. It can therefore be argued that bioethics has now entered
a new phase, i.e. global bioethics (Ten Have and Gordijn, 2014). On
this new stage, global bioethics needs to go beyond the focus on human
beings as autonomous individuals; it must emphasize the interconnect-
edness of humans, and the inter-relations between human beings and the
environment. This means building bridges between the present and the
future, science and values, nature and culture, and human beings and
nature, exactly as argued by Potter (Ten Have 2012a).

Neoliberal biopolitics
The turn to global bioethics implies a critical analysis of the domin-
ant ideology of neoliberalism. The range of present-day problems such
as environmental degradation, persistent poverty, violence, growing
inequalities, brain drain, exploitation, marginalization and discrimin-
ation are not so much the result of globalization as they are of a particu-
lar kind of globalization. This kind of globalization emphasizes that only
free markets can foster individual liberty and human well-being. In this
ideology, public utilities, social welfare provisions and public institutions
should all be privatized. Every domain of human life should be open for
market transactions so that individual citizens are free to choose what
they want. Genetic tests and preventive as well as therapeutic interven-
tions are consumables. Healthcare is a business that will lourish in a cli-
mate of competitiveness and eficiency. Medical research can thrive if it
operates in a global market. This ideology proclaims that only the market
model is able to provide individuals with a range of choices concerning
drugs and interventions, broader than ever before (Braedley and Luxton
2010; Harvey 2005).
Neoliberal ideology is often uncritically reiterated in the bioethical dis-
course. Its focus is on the autonomous individual rather than on the
citizen who is connected to others and is part of a larger community.
 Rights in the era of neoliberal biopolitics and bioeconomy 137

The same is true for the moral debate concerning genetic technolo-
gies. Discussing the ethical implications generally tends to highlight the
impact of genetics at the level of individuals. The principle of respect for
autonomy is often the starting point for considering these implications.
Emphasis is on the proper management of information by individual citi-
zens, on informed consent, privacy regulations, and the right to know and
the right not to know. The citizen is regarded as a consumer who has to
choose on the basis of his or her perceived self-interest among the many
possibilities that are offered by modern genetics. Life is a ‘business plan’
that requires constant accumulation of genomic data and careful man-
agement by its owner (Sunder Rajan 2006, p. 144). The moral debate is
therefore not theoretical but focused on the practical applications. What
will be the impact of this new inding or test for the individual with a par-
ticular condition or disease? The potential use of new knowledge drives
the attention of the media, as for many other innovative products on the
public market. New discoveries and research indings in the bio-molecu-
lar life sciences are rapidly presented and discussed in public forum. The
moral debate is characterized by the immediate interest of translating the
public’s fascination with new data, devices and discoveries into practical
applications for the public consumer market.
The awareness that the context of the bioethics assessment of gen-
etics and new technologies in general has signiicantly changed carries
fundamental consequences. First, it articulates the fact that mainstream
bioethics itself is impregnated with the market ethic of neoliberalism.
Bioethical discourse can only have a really critical stance if it liberates
itself from the dependency on the neoliberal discourse. Second, the pro-
cess of geneticization is a manifestation of the logics of neoliberalism in
the area of genetics. It is like the process of medicalization as analyzed
in the 1970s. It is an exemplar of more general, encompassing processes
that have been summarized since Michael Foucault under the label of
‘biopolitics’ (Lemke 2011). This speciic form of exercising power has
transformed human beings into autonomous subjects with control over
body, life, death, health and disease. But while some forms of individual-
ization were allowed, other forms were denied. The same movement that
empowered individuals and liberated them from some forms of oppres-
sion resulted in other forms of domination. This is also the Janus face of
medicalization: at the same time as it provides certain beneits, it also
subjects patients to forms of discipline.
However, medicine is not simply ‘medicalizing.’ Instead of using dom-
ination and control, the ield of medical power has been reformulated.
The locus of medical power is no longer the individual physician but is
instead located in large, pervasive structures encompassing physicians
138 Henk ten Have

and patients alike. Medical power is also no longer exclusionary but has
become inclusive; challenges from alternative healthcare, bioethics, the
hospice movement or patient organizations are rapidly incorporated into
‘orthodox’ medical practice. The new ield of medical power, therefore, is
not so much dependent on domination and control as it is on monitoring
and surveillance. The governance of individualization requires self-reg-
ulation, stimulation, nudging and incentives. Because the application of
technologies depends on the individual choice of rational consumers, it is
increasingly dificult and no longer relevant to address the social context
of decision making. If health is the product of (responsible) choice, and
human enhancement technologies can even further improve individual
health, why should one bother about social and economic determinants
of health (Birch 2008)?
Today it is recognized that biopolitics cannot be separated from the
economization of life. The rational consumer is not independent but
fundamentally guided by the market processes. Since protection and
safety provided by the state are deliberately decreased, individuals
must rely on self-management and various forms of self-care. We are
autonomous managers of ourselves; disease and death are the result
of investment decisions in our biocapital (Lemke 2011). This does
not imply an increase of self-determination but is rather a new type
of social control; only certain decisions about the body are regarded
as rational and responsible (Memmi 2003). Biopolitics has become
equivalent to bioeconomics. Biotechnical innovations and the life sci-
ences represent a new form of neoliberal economy, embodying the
high-risk, free-market frontier spirit of innovation that is characteristic
of American genomics compared to biotechnology in India (Sunder
Rajan 2006). The drive towards personalized medicine, for example,
brings together the medical risks of patients and the inancial risks of
pharmaceutical companies. Sunder Rajan (2006, p. 112) calls this a
form of ‘speculative capitalism,’ not based on concrete products, but
on hopes and expectations, just as in inance futures and derivatives
have replaced sales and proits. Genomics has especially developed into
a venture science. This is the reason why the emergence of biotechnol-
ogy has been connected to the rise of neoliberalism (Cooper 2008).
Creation and speculation, rather than production and generation are
the main features of such techno-scientiic capitalism. Biotechnology
will only be funded if its promissory visions are credible (independ-
ent of whether they are true or not). Biotech companies have to sell
‘their visions of future products as much as or more than selling the
products themselves’ (Sunder Rajan 2006, pp. 129–30). Credibility is
obtained when the future accounts for the present. It is only through
 Rights in the era of neoliberal biopolitics and bioeconomy 139

propagating visions of the future that the conditions of possibility of

the present can be created.

Delineating and expanding the public domain

Patenting
The decision of the US Supreme Court in June 2013 that human genes are
not patentable marks an important step in redeining the public domain.
By afirming the boundary between products of nature and human inven-
tions, the court invalidated Myriad Genetics’ patents on breast cancer
genes. This decision, as recent commentators put it, will ‘foster scientiic
discovery by protecting and expanding the public domain’ (Kesselheim
et al. 2013, p. 6). The important implication is that the balance between
commercial interests and public health is going in the direction of the
latter. Health is more important than proits. The common arguments
that patents are needed to protect property rights and innovation have
been substantially undermined. At least in this particular case, the evi-
dence suggests that the business practices of Myriad Genetics had in fact
reduced access to testing and reduced product development (Kesselheim
et al. 2006). As a result of the court’s decision it will be more dificult for
companies to claim a monopoly on genetic diagnostic testing. There are
also two important ethical notions involved. One is fairness. Like many
other discoveries and innovations, the initial breakthroughs took place
in the public domain. Without the pioneering research of Mary-Claire
King at the University of California the BRCA genes could not have
been isolated (Davies and White, 1995). This illustrates an important
point that is sometimes lost in the neoliberal reimaging of science, one
that is aptly expressed by Stiglitz: ‘Most of the key innovations … were
not motivated by pecuniary gain. They were motivated by the quest for
knowledge’ (Stiglitz 2013, p. 4). It does not seem fair that the beneits
of this research are then appropriated for the commercial interests of
private parties. Similar unfairness is the result of the patenting regime; it
is creating monopoly-like power with a lack of competition which espe-
cially drives up the pricing of medication. The result is that access to new
drugs decreases for many people, in particular those in resource-poor
countries (Blasi 2012; Correa 2004). The patenting system thus contrib-
utes to global injustices. The other notion involved is the common heri-
tage of humankind. The Universal Declaration on the Human Genome
and Human Rights, adopted by UNESCO in 1997, used this notion
to argue that the human genome is the heritage of humanity and ‘shall
not give rise to inancial gains’ (UNESCO 1997). This position is now
140 Henk ten Have

endorsed by the Supreme Court. This notion emphasizes that scientiic

ideas should be freely exchanged and therefore that access to knowledge
should not be restricted. This will be an important change in US sci-
ence policy, while in the European Union the patenting of DNA and the
human genome has been prohibited since 1998 (in the USA the Myriad
patents were granted in 1998 and will expire in 2015).

Data sharing
Another area where the public domain is currently being redeined is in
data sharing. Initiatives have been taken to publicly release all patient-
level data from clinical trials. These public repositories will facilitate fur-
ther analysis and examination so that claims about eficacy, effectiveness
and safety can be independently scrutinized. It has been known for a
long time that negative information is hardly ever published, and that
published clinical evidence is often selective, biased or incomplete. The
sharing of data at an early stage can therefore be beneicial for patients.
The ethical point is that public beneit is regarded as justifying the
overriding of data protection (and sometimes industry secrets). But it
also demonstrates that scientiic activity is a communal and coopera-
tive enterprise. It should be an open and collective effort to corrobor-
ate the best evidence available to make sure that approved therapies are
really beneicial. The expectation is that pharmaceutical companies will
soon start sharing detailed clinical trial data. This surely signals that the
culture of science is changing (Krumholz et al. 2013). Recently many
research funding organizations such as National Institutes of Health
(NIH) and National Science Foundation (NSF) in the USA have estab-
lished data sharing policies. However, scientists in general are reluctant
to share data. Some disciplines are positive exceptions. In astronomy, for
example, scientists have built archives of shared digital images of the uni-
verse. Genomics research is also based on the principles of open access
and sharing. These principles have been strongly enforced due to the
competition in the Human Genome Project between public and private
researchers and the possibility that private company Celera would patent
the human genome. Genomic research therefore has developed, at an
early stage, data-sharing policies, requesting that all data be publicly
released and accessible. Particularly with the emergence of global collab-
orative research networks it is imperative to share data and samples. The
assurances of freely available knowledge are the basis for projects such as
the International HapMap Project and the 1000 Genomes Project (Kaye
2012). But even in this academic area, 47 percent of interviewed aca-
demic geneticists reported that they had been denied access to published
 Rights in the era of neoliberal biopolitics and bioeconomy 141

information, data and materials by colleagues (Campbell et al. 2002).

The current trend to data sharing is a paradigm shift because it priori-
tizes openness and transparency. Thomas Merton has recognized this as
essential for science for two reasons: it is crucial for the integrity of sci-
ence since it allows independent veriication, replication and peer review
of evidence, and it is crucial for the training of the next generation of
scientists (Ten Have 2007). It is no longer debated whether data should
be shared, the debate is now how to share data. Sharing has now become
the norm.

Open access
Another recent development is the increase of open-access publishing.
This movement is re-emphasizing the traditional value of free circula-
tion of scientiic knowledge. Unrestricted access to publications is essen-
tial for the progress of science (Willinsky 2006). Researchers do not
write publications for money, and the Internet now provides many more
opportunities for circulating knowledge. It is clear that current business
models will not easily be overturned, with publishers shifting the inan-
cial burden from readers to authors, increasing the costs of research
projects that now need to include budgets for publications, and with the
increase of predatory publishers who hope to beneit from the author-
pays model (Beall 2012; 2013). However, since free access is essential for
global, democratized science enabling everybody, including patients, to
learn the results of the latest research, the scientiic community is taking
various initiatives, for example the creation of institutional repositories
at universities.

Open science
The three developments discussed, namely the rejection of gene patenting
as well as the moves towards data sharing and open access, indicate that
after decennia of neoliberal ideology contemporary science is attempt-
ing to redeine its territory. Perhaps in response to the series of scandals
concerning scientiic misconduct and conlicts of interests, a new ethos
of science is emerging, emphasizing that science should be developed for
the sake of speciic values such as knowledge and health, not for proits.
It is a human activity that may be promoted or stimulated with economic
support but that may not itself be a commercial activity, risking other-
wise the loss of its speciic identity and its normative basis. The lesson
of the last decade is that science has too often been compromised by
commercial interests and external inluences. This has seriously affected
142 Henk ten Have

its credibility and jeopardized society’s trust and support. Demarcating

and expanding the public domain will allow science to remain an inde-
pendent and collaborative endeavor. This will create optimum conditions
in which the right to know for everybody can be effectuated. However,
the new ethos of science is producing growing tensions with the notion
of privacy. Science is proiling itself as an expression of human creativ-
ity, not for private gain but for public beneit, and thus different from
commercial enterprises. It strives to establish non-economic ‘markets’ or
rather agora for the free exchange of ideas and knowledge. The question
is how can a more open science that is maximizing the right to know be
reconciled with the conservation of the right not to know?

Protecting privacy
The right not to know is important in protecting the intimate sphere of
the individual person. It deines a zone of inaccessibility that demands the
respect of other people for one’s personal autonomy and integrity. This
explains why privacy is important. One argument is that everybody has
the need to preserve his or her subjectivity. In social interactions we are
‘persons’, i.e. masking and playing roles in order to sustain these interac-
tions. We need to have the ability to retreat into a private sphere in order
to maintain our integrity. If we can no longer demarcate our subjectivity
in this private sphere, we have no personality left. Another argument is
that private information is necessary to establish and intensify personal
relationships. The individual decision to share information with someone
transforms this person into an intimus. If everybody knows everything
about us, we will no longer be able to engage in personal relationships.
A third argument is that private information can only be properly under-
stood in the narrative context of the whole life of the individual. This is also
the reason to keep it private since out of context it is easily misinterpreted
and may lead to a false and one-sided image of that individual. This is
particularly relevant for genetic information; we do not want to be labeled
as a carrier or someone with susceptibility for a speciic disease. We need
to independently deine ourselves and not be submitted to others’ projec-
tions and labeling: ‘without a degree of privacy we are in danger of being
judged out of context’ (Herring and Foster 2012, p. 23). All arguments to
protect privacy share a common assumption that privacy is a social value.
Concerns about the private sphere can only emerge because people live
together and are inter-related in the irst place. Furthermore, individual
existence only has its speciic qualities as long as other people respect its
unique character. Even if privacy protection is focused on the individual
person, its value is derived from the social character of human beings.
 Rights in the era of neoliberal biopolitics and bioeconomy 143

It is important to articulate the reasons to protect privacy because

nowadays it is widely felt that privacy is rapidly becoming an illusion.
Recently, cases came to light showing that privacy is not well respected.
The publication of the HeLa genome sequence and the subsequent nego-
tiations with the family of Henrietta Lacks demonstrate that not only had
the cell line been created without the consent of Henrietta in 1951, but
that in 2013 genome data are simply regarded as public information.
Researchers could not even imagine the private concerns of family mem-
bers (Callaway 2013; Zimmer 2013). The summer of 2013 also made it
clear that in principle all communication is accessible for security ser-
vices. The private sphere is evaporating under the continuous surveil-
lance of the contemporary state, and personal information is retrievable
and usable for the sake of ‘security’ without public accountability and
outside proper legal frameworks (Ellsberg 2013). The practical impos-
sibility of privacy protection was illustrated earlier the same year in a
publication showing that the identity of 50 individuals who participated
anonymously in genetic studies could be discovered by cross-referencing
their samples with publicly available information (Gymrek et al. 2013).
The scholarly literature now abounds with warnings about ‘genome leak-
ing’, ‘DNA theft’ and ‘genome hacking’ (Brenner 2013; Hayden 2013a;
Joh 2011).
The current precariousness of privacy has serious repercussions for
the efforts to expand the public domain. In my view there are two differ-
ent discussions. One concerns the public domain as an area to promote
knowledge and health, the other as a commercial market. In the irst area
we are confronted with legitimate attempts of geneticists to share data,
for example the recent initiative to set up a global alliance for data shar-
ing (Hayden 2013b). International cooperation may not only determine
standards for storing and assessing the accuracy of genetic sequences,
but also for access and sharing. It may also overcome the current dei-
ciencies through techniques of de-identifying and making data anonym-
ous (Knoppers, Zawati and Kirby 2012). However, the challenges are
not only technical. They also require rethinking procedures for consent,
as well as modalities of access to biobanks and biorepositories, so that
the right not to know can be preserved. In this area of discussion the
general assumption seems to be that privacy protection is facing practical
dificulties and may never be fully guaranteed. It is an ethical consider-
ation that needs to be pursued as much as possible, otherwise the public
will lose trust in medical and genetic research. This is the view of the
recent report of the Presidential Commission for the Study of Bioethical
Issues (Gutmann and Wagner 2013). It advocates three levels of protec-
tion: individual consent, institutional control of access and professional
144 Henk ten Have

standards to prevent misuse. The conditions necessary to implement the

right not to know must therefore be further strengthened and articulated
in enhanced policies.
In the other area of the debate the assumptions are different. It is
argued that whole genome sequencing is unavoidable, and that direct-to-
consumer testing is already widely available, and so personalized medi-
cine as a commercial enterprise is already there. In this context people
who donate genetic materials should know that their privacy cannot
be guaranteed. So much personal information is currently exchanged
through social media and the Internet that privacy is dead anyway. The
general expectations of the public regarding privacy are also changing
(Rodriguez et al. 2013). Surveys show that the majority of research par-
ticipants are in favor of public data release (McGuire et al. 2011). These
views are consistent with neoliberal ideology: it is up to the individual to
decide whether, when and how privacy is protected. No harm has been
done to anyone identiied. Whether there is any harm is determined by
the rational consumer/provider. The right not to know in this view is
ultimately privatized but has at the same time become futile since the
individual can no longer control how personal information is used once
it is released. The arguments in this view are in fact proceeding from
geneticization of privacy; it has become a set of genes that expresses
the identity of the person. Privacy is like a commodity that can be used,
exchanged and transacted. It reiterates the genetic conception of the
self. I remember the story told by American biologist Lee Silver dur-
ing a conference in Portugal in the 1990s; since he himself had healthy
genes, he was looking for a spouse with healthy genes too. When he met
an interesting candidate, the irst thing they did was exchange genetic
proiles.
The debate on privacy demonstrates that it does matter whether priv-
acy is regarded from an individual or social perspective. In the neoliberal
view of science and healthcare as business, privacy is a commodity con-
trolled by each individual, especially now that it is reduced to the genetic
make-up of the individual. With the new technologies of sequencing and
online testing more information is easily obtainable, but the boundary
between personal and public knowledge is disappearing. Just as informa-
tion about shopping habits or Internet browsing preferences are shared
for the beneit of the market, genetic information is no longer purely pri-
vate information. This is not because it is relevant for relatives but rather
because it is necessary to free exchange which is the hallmark of the free
market and necessary for the expansion of the business of science. This
view then, paradoxically, emphasizes privacy as an individual value while
at the same time submits it to the controls of the neoliberal market. In
 Rights in the era of neoliberal biopolitics and bioeconomy 145

the ideal consumer society every client is open and transparent so that
transactions are not restricted.
The inadequacy of this approach is demonstrated in the survey men-
tioned above; white participants are less restrictive concerning data shar-
ing than participants from minority groups (McGuire et al. 2011, p. 954).
Privacy has already been articulated for a long time through concerns
about access to information by third parties: governmental agencies, insur-
ers and employers. Privacy immediately raises the specter of genetic dis-
crimination and stigmatization. From this perspective, privacy is primarily
a social value. Human beings are not merely characterized by biological
life, marked by illnesses identiiable with genetic technology, but perhaps
even more by political life, engaged in common efforts of societies and
communities. The distinction between biological and political life, how-
ever, is continuously challenged by new technologies that reduce collective
perspectives to individual ones, and eliminate the demarcation between
private and public. The ideal of ‘personalized medicine’ is criticized
because of this exact tendency. By dividing the large population into small
sub-populations deined by speciic genetic proiles, health interventions
can be tailored for individuals. The beneits of ‘better’ therapy for some
individuals imply the progressive exclusion of many others. Many individ-
uals and populations will become ‘orphaned’ (Savard 2013, p. 200).

The role of bioethics

The implications of the concept of geneticization on bioethics are being
increasingly studied (Keane 2010; Nowotny and Testa 2010; Rouvroy
2008; Weiner and Martin 2008). Using the concept requires a crit-
ical analysis of the current ethical discourse in genetics. The principle
of respect for autonomy plays a crucial role in this discourse. Patients
are not passive ‘docile bodies’ under the control of medical power but
articulate consumers and autonomous decision makers. However, this
emphasis on autonomy tends to overlook the fact that social arrange-
ments frequently predetermine the range of choices available to individ-
uals in a particular society. Autonomous choices always take place within
speciic social and cultural settings and are therefore determined by the
constraints of this context. Patients’ choices regarding the use of genetics
are predetermined by the constraints of the healthcare system but more
importantly by the ‘geneticized’ environment. This context is ‘consonant
with the contemporary neoliberal emphases on individual responsibility,
self-governance and a prudential approach to controlling and transform-
ing one’s future’ (Clarke et al. 2009, p. 33). Many of these neoliberal
values are emphasized by bioethics.
146 Henk ten Have

The concept of geneticization redirects philosophical scrutiny and

refocuses moral discussion. It particularly draws attention to social–
ethical issues, which tend to be neglected or disregarded because of
the current domination of the moral principle of respect for individual
autonomy. This is also true for the debate on the right to know and not
to know; it is often concerned with analyzing the individual possibilities
and applications rather than the social context in which these rights are
articulated and exercised. The notion of geneticization allows bioethical
analysis to criticize the oversimpliications in current approaches to gen-
etics, and to rethink common concepts of ‘disease’, ‘health’, ‘body’ and
‘information’. The genetic discourse of today is itself the manifestation
of the major values of a neoliberal society and culture, but it is shap-
ing them into an objective, scientiic form, presenting ‘neutral’ options
that can satisfy the preferences and desires of informed and rational
consumers. Bioethics should not be seduced by genetics as a scientiic
endeavor but should irst of all critically focus on the neoliberal ideology
in which genetics is used to meet the expectations, hopes and desires
of individual consumers with their perennial quest to overcome aging,
suffering, disability and initeness. In this ideology genetics is often used
as the primary driver to commodify and commercialize human life and
human bodies.
The contemporary trend towards open science and the aim to expand
the public domain are efforts to demarcate science (and healthcare)
from the dominant reign of neoliberalism. The right to know in this
approach is extended to anyone, regardless of economic and social inter-
ests. Expansion of the public domain is impacting on the right not to
know, especially if privacy is regarded as a merely individual concern.
But when rejection of gene patenting and emphasis on data sharing and
open access are considered as expressions of the desire to preserve a
context of commonality for the search of knowledge, a different view
of privacy will emerge. Personal information in this view is not merely
relevant for the individuals concerned but is necessary for the creation
and care of interpersonal relationships and bonds within communities
and societies. It is therefore necessary to utilize sophisticated information
technology to ensure that the right not to know can be exercised. It also
requires the continuous involvement of participants in research projects
and donors of biomaterials in ongoing scientiic activities, updating and
renewing consent processes. From this viewpoint, concerns for the public
domain and for protection of privacy are both the expression of the idea
of moral community. They show the inluence of new approaches within
the emerging ield of global bioethics, articulating new principles such as
protecting future generations, intergenerational justice, beneit sharing
 Rights in the era of neoliberal biopolitics and bioeconomy 147

and social responsibility. The new discourse on the global moral commu-
nity is motivated by the concept of the ‘common heritage of humankind’
(Joyner 1986; Ten Have 2011, 2013). Introduced into international law
in the late 1960s to regulate common material resources, such as the
ocean bed and outer space, the concept was expanded in the 1970s to
include culture and cultural heritage. It led to a global civilization pro-
ject that seeks to create a new global community representing humanity
as a whole, enabling the identiication of world citizens, and evoking a
sense of global solidarity and responsibility. A signiicant new step was
the application of the concept in global bioethics, irst in the ield of gen-
etics in the late 1990s, followed in the 2000s by the adoption of a global
framework of ethical principles by almost all countries in the world (Ten
Have and Jean 2009).
The emergence of this broader ethical framework can be an important
antidote to the neoliberal market approaches in science and healthcare.
Bioethics can liberate itself from this dominant ideology and be reborn
as critical discourse that represents a global geography of moral values
that enables humanity itself to be regarded as a moral community. It
implies that citizens of high-income countries will no longer be indif-
ferent to double standard clinical research practices or unequal health-
care settings in low-income countries since the same moral values and
standards will apply within the global community. It also implies that
current efforts in science to reclaim the public domain and at the same
time protect privacy should be supported by bioethical analysis since it
afirms that scientiic research is primarily committed to beneit human-
ity rather than to generate proits for an already privileged section of the
population.

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ref=nationalinstitutesofhealth&_r=0 (accessed September 11, 2013).
10 The parental love argument against
‘designing’ babies: the harm in knowing that
one has been selected or enhanced

Anca Gheaus

In this chapter, I argue that children who were selected for particular
traits or genetically enhanced might feel, for this reason, less securely,
spontaneously and fairly loved by their parents, which would constitute
signiicant harm. ‘Parents’ refers, throughout this chapter, to the people
who perform the social function of rearing children, rather than to pro-
creators. I rely on an understanding of adequate parental love which
includes several characteristics: parents should not make children feel
they are loved conditionally, for features such as intelligence, looks or
temperament; they should not burden children with parental expecta-
tions concerning particular achievements of the child; and parental love
is often expressed in spontaneous enjoyment and discovery of children’s
features. This understanding of parental love provides a reason to ques-
tion the legitimacy of parental use of selection and enhancement and to
explain why parents should not engage on a quest for the ‘best child’.

Introduction
Is there anything morally objectionable about parents trying, with the
help of genetic technology, to ensure that their children will have features
that are usually regarded as advantageous, such as good looks, excep-
tional cognitive abilities or sunny temperaments? Given that parents
cannot but shape their children in a variety of ways – through deciding
on diets, socialisation, education, use of free time and so on – what, if
anything, speaks against a parental decision to select or to enhance their
future children in medically and morally irrelevant ways?
There are many worries about the creation of ‘designer babies’
(Buchanan 2011). Several apply independently of whose decision it is
to select or enhance, and they concern: the risks involved in the use of
genetic technology (Buchanan et al. 2000: 191–6); the diminished auton-
omy of the resulting children (Habermas 2003; Harris 2007: 137–42)
and failure to respect the children’s right to an open future (Buchanan

151
152 Anca Gheaus

et al. 2000:170–6); the misdirection of scarce resources into trivial or

misguided goals (Rajczi 2008); and the likely futility of using genetic
technology to manipulate features which are valued for the competi-
tive advantage they can confer (Buchanan et al. 2000: 182–7). If enough
children were to become, through genetic technology, more attractive,
intelligent and socially pleasant, then the very standards of beauty, intel-
ligence and social appeal would change.
Other objections focus, speciically, on the limits of the authority that
parents may exercise in relation to their children. First, there is an egal-
itarian concern about the permissibility of buying advantage, especially
competitive advantage, for one’s children (Buchanan et al. 2000: 187–91;
Daniels 2001). A second worry stems from the special impact of the par-
ent–child relationship on children’s (future) autonomy: genetic engineer-
ing for medically and morally irrelevant features imposes on children the
parents’ particular conception of the good (Clayton 2006: 104).
I propose an explanation of the wrong of parental ‘design’ that elaborates
on the latter kind of criticism, unpacking the meaning of parental impos-
ition in this context. I base my account on a morally informed conception
of parental love that requires parents to value their children independ-
ently from the children’s non-moral characteristics. Adequate parents, in
this account, are accepting, can enjoy their children spontaneously and
refrain from putting burdens of expectations, beyond very minimal ones,
on their children. This desiderata is often expressed in everyday moral rea-
soning in the thought that parental love should be unconditional. Here I
defend this claim about parental love by reference to the values of a secure
and fair attachment between children and parents.
This is not to deny that, while ‘designing’ involves a sort of harm to
children, it can also bestow beneits – some of which may be morally
important. An all-encompassing evaluation of particular enhancements
will have to relect various considerations, only one of which is discussed
here (Buchanan 2011: 175–6). Depending on how much weight one
gives to the ideal of parental love advocated here, relative to other inter-
ests of children, parents may or may not turn out to have a moral right
to create ‘designer babies’.
In a nutshell, I hold that it is wrong to burden individuals with very
particular parental expectations, since this unduly limits their psycho-
logical freedom to lead their lives without the guilt of disappointing their
parents. I suggest that children who know they have been subjected to
genetic engineering will be likely to carry an illegitimate burden of paren-
tal expectation; this situation could be avoided only if parents concealed
from their children the fact of their genetic engineering. However, it is
implausible that parents have a moral right to lie to their children in this
 The parental love argument against ‘designing’ babies 153

particular situation; lying is inimical to love and intimacy, and in this case
it can easily be avoided by refraining to engage in genetic engineering in
the irst place. Therefore, good parents have a pro tanto reason not to use
genetic engineering to ensure medically and morally irrelevant features
of their children.

The traditional argument against parental design

The spirit of my argument is captured by many people’s belief that good
parents should not use genetic technology to ‘design’ non-medical fea-
tures of their future children, such as looks, intelligence and personality.
Several recent documents on the ethics of new biotechnologies relect
this belief. In 2003, The Human Fertilisation and Embryology Authority
(HFEA) released a document, based on wide public consultation, which
recommended outlawing gender selection and, in general, opposed non-
therapeutic uses of genetic technology. The report argued that ‘children
selected for their sex alone may be in some way psychologically damaged
by the knowledge that they have been selected in this way as embryos’.
More speciically, the worry is that ‘such children would be treated preju-
dicially by their parents and that parents would try to mould them to
fulill their (the parents’) expectations’ (quoted in Harris 2007: 156). In
the United States, the President’s Council on Bioethics raised a similar
concern, suggesting that the use of genetic technology in order to shape
one’s future child is incompatible with the kind of parental love essential
to good parenting – and thus implying that ‘designer’ children would suf-
fer some sort of psychological harm:
The attitude of parents toward their child may be quietly shifted from uncondi-
tional acceptance to critical scrutiny: the very irst act of parenting now becomes
not the unreserved welcoming of an arriving child, but the judging of his or her
itness, while still an embryo, to become their child, all by the standards of con-
temporary genetic screening.
(President’s Council on Bioethics 2003: 54–5)
The worry is that, by setting conditions on the child they will have, par-
ents make, at least to some extent, their welcoming of their child con-
ditional. In other words, the attitude encouraged by genetic design is
incompatible with the ideal of parental love, which should not be depen-
dent on morally indifferent features of the beloved:
the idea of parenthood should take for granted: that each child is ours to love and
care for, from the start, unconditionally, and regardless of any special merit of
theirs or special wishes of ours.
(President’s Council on Bioethics 2003: 71)
154 Anca Gheaus

Some philosophers, too, have worried that selection or enhancement

might either entail or at least indicate something morally objection-
able about the parents themselves: a lack in parental virtue (McDougall
2005; McDougall 2007). Adequate parenting, according to this view,
must ind the right balance between extremes of control and restraint
which ensures enough guidance to children without failing to accept
them as they are (Fox 2008). Since I rely on an ideal of adequate paren-
tal love which is accepting and not overly controlling and burdening,
there is an obvious connection between my argument and discussions
of selection and enhancement in terms of virtue ethics. However, my
concern is not with parental character but with the possible harm to
the children; hence I shall not couch my arguments in the language of
virtue ethics.
I reformulate the above worries by taking the child’s perspective, to
show that their validity does not depend on the plausibility of virtue
ethics. I assume children have a powerful interest in adequate parental
love. Unlike some of the above criticism, I do not hold that parents who
enhance their babies necessarily fail to love them for this reason; but,
rather, that children who know their parents decided to enhance them
are likely to feel, for this reason, burdened with unfair parental expec-
tations. One does not need to rely on an ideal of parental love that is
entirely unconditional – it is enough to claim that such love should not
be conditional on morally irrelevant features such as looks, intellectual
abilities and temperament. An additional assumption is that, in the con-
text of the very intense and asymmetric relationships between parents
and children, love is not always perfectly transparent. It is possible for a
parent to feel love for her child and, while acting on it, make the child
feel unduly burdened by parental expectations, and, for these reasons,
experience parental love less securely and fairly.
The scope of the present argument is restricted to non-moral, and also
to non-medical uses of genetic technology; the distinction between med-
ical and non-medical uses of genetic technology, sometimes referred to
as therapy versus enhancement, is far from straightforward. Yet, I assume
that disease and disability entail serious harm. Much of this harm might
indeed be, as proponents of the disability movement have argued,
socially generated. While we collectively might have a duty to eliminate
the socially generated harm, any particular parent who lives in a society
she cannot change, has weighty reasons to try to protect her (future) chil-
dren from disease and disability. This provides a strong reason to prevent
disease and disability. Because there are very weighty reasons to pre-
vent harm, it is unlikely that children will perceive their parents’ genetic
therapy as unloving in any way.
 The parental love argument against ‘designing’ babies 155

Parents can (in theory) use genetic technology to decide on features of

their future children either by selecting from a number of already existing
embryos those that have the most ‘promising’ genes (henceforth, ‘selec-
tion’), or by prenatal gene therapy (henceforth ‘enhancement’). Because
selecting determines which children will exist while enhancement affects
already existing embryos, the arguments of this paper will apply differ-
ently to cases of enhancement and cases of selection. The reason for this
differentiation has to do with the non-identity problem. The two differ-
ent types of design lead to two different worlds. A world with selection is
a world which contains different individuals than a world without selec-
tion; hence, it cannot be claimed that there is any individual who would
have been better off without selection. However, if one subscribes to a
non-comparative conception of harm (Shiffrin 1999), one can see why
a child whose important interests are frustrated can be said to suffer
harm even if the act that caused the harm was necessary for bringing that
child into existence. By contrast, enhancement is objectionable because
it harms children that would have existed anyway.
In the next section I argue that there is a prima facie reason to worry
that using selection or enhancement will be harmful to children. In the
fourth section I briely look at possible consequences of enhancement
and selection for people other than the selected or enhanced children
themselves and at the implications of my arguments for parents’ envir-
onmental choices.

The child’s interest in unconditional parental love

Parental love that is conditional on morally irrelevant features of the
child hurts the child’s interests in a love that is accepting, spontaneous
and fair – that is, free from illegitimate psychological burdens. These
interests are likely to have different degrees of importance, and, for the
sake of this argument, the most important is the interest in fairness.
Also, these interests need not amount to the existence of a right in the
kind of parental love that I defend in order to indicate that selection
and enhancement are morally problematic. But if these interests exist,
children have grounds for complaint when parental love is conditional
on morally irrelevant features of the child. The language of needs, or
interests, rather than rights, is an obvious choice in discussing the mor-
ality of reproductive choices in general. Interests and rights are closely
related concepts, since, according to one prominent theory, rights pro-
tect very powerful interests. So, framing the issue in terms of interests
will allow for more ine-tuned guidance, even if not all interests can
ground children’s rights or parental duties. Everyday discussions about
156 Anca Gheaus

moral issues involving people who are in close personal relationships

are often formulated in terms of needs or interests. Because interests
carry normative implications, and because there are likely to be more
interests than rights, a moral analysis in terms of interests is capable of
identifying a wider range of moral reasons than an analysis that appeals
exclusively to rights. Moreover, an ideal of identifying, negotiating and
satisfying interests seems a better guide to evaluation and action involv-
ing people who are engaged in intimate and long-lasting relationships
with each other, than appeals to rights. This is the main insight into
what came to be known as a feminist ‘ethics of care’, deined by a choice
of moral language that places needs and interests at its core (Gilligan
1982; Noddings 1984; Ruddick 1989). This is not to say that, if conlicts
cannot be settled in ways that satisfy all parties, appeals to rights are out
of place in intimate relationships. But as long as individuals love each
other – that is, as long as they do not see their interests as mutually inde-
pendent or only contingently dependent on the other person’s interests
(Kittay 1999) – the harming of one party’s interests is a serious ground
for moral criticisms even if no rights have been infringed upon. Since I
assume that adequate parents love their children, their harming of their
child’s interests is morally problematic whether or not this amounts to a
violation of the child’s rights.
Alongside interests in physical preservation and development, one of
the fundamental interests of children is that of forming a secure, per-
sonalised and fair attachment to their parents. I stipulate that, in order
to create such an attachment, parental love has to be unconditional on
morally irrelevant features of the child. Love that is unconditional in this
way responds to the child’s interest because it facilitates a secure, per-
sonalised and fair attachment. First, it makes children feel accepted and
valued beyond the individual features they have. Adequate parental love
is, at the very least, perceived as unconditional because it is not given for
the sake of particular characteristics such as intelligence, memory, phys-
ical features, happy temperament, creativity or special talents. Children
feel securely loved when they are convinced that their parents would
continue to accept and value them if they decided to dramatically change
their looks, if they turned out to be less intelligent, creative or skilful
than expected, if they discovered a different sexual or gender identity for
themselves, and so on. By contrast, the worry that one is being loved for
any or a combination of such characteristics erodes one’s sense of being
securely loved. When one worries that one might be loved because one
is blond, tall, smart and cheerful, one actually worries that he or she is
not really being loved. Especially for small children, a secure feeling that
one is accepted and valued for who one is (and becomes) is particularly
 The parental love argument against ‘designing’ babies 157

important for one’s development as a conident, well adjusted, resilient

and hopeful human being (Liao 2006).
Second, unconditional love can foster a sense of personalised attach-
ment to the parent, because such love is more conducive to parental
attitudes that encourage the children to discover who they are; moreover,
loving one’s children unconditionally seems to require an ability to take
pleasure in discovering who the child is.
Finally, in order to feel adequately loved by their parents, children
should not be burdened with excessive responsibility for their parents’
happiness. Good enough parental love is unconditional also in the sense
that parents’ happiness does not depend on any particular, or outstand-
ing, form of success of their children. It also implies that parents should
not make children feel responsible for the various sacriices adequate
parents often make for their well-being. This is not to deny that adequate
parents should strive to equip their children with the necessary know-
ledge, habits and intellectual and social skills to lead good lives. The par-
ental duty to foster their children’s development involves encouraging
certain features and discouraging others, and often making decisions
that will affect profoundly the children’s development. But parental duty
does not mean that parents may push their children into either high lev-
els of achievement (like reading and writing extremely early) or special
kinds of achievements (like playing the piano). When children seem to
develop their own desire to learn how to read at three or to play the piano
for most of their free time, thus giving clear hints about what a good life
might come to mean for them, parents might be under a duty to facilitate,
and even gently steer their children to explore this path. However, in order
to pursue good lives successfully, children need, alongside nurturing and
education, the ‘permission’ of their parents to be and do whatever makes
them happy. They need to not feel guilty for being or trying to become
something that their parents would not have chosen themselves. In other
words, they need to feel ‘free’ to lead the kind of life they choose within
the limits of what is permissible – free, that is, from any guilt that they are
making their parents unhappy. If this need is frustrated by parents, chil-
dren are likely to feel less loved than they would if their parents did not
burden them with perfectionist expectations. This is, obviously, an empir-
ical, psychological claim. Transactional analysis, amongst other schools
of psychological therapy, works with the assumption that many people
limit their own development, or force on themselves choices that do not
make them happy due to more or less conscious feelings of responsibility
and guilt towards their parents’ plans for them. As evidence at the level of
common knowledge, it is true that people sometimes wish their parents
had encouraged them more to develop talents they think they would have
158 Anca Gheaus

liked to develop. But it is uncommon, if at all plausible, to complain that

one’s parents have not forced you into some kind of special achievement.
With this speculative, but hopefully not implausible, sketch of how
children need to be loved by their parents, the concerns expressed by the
President’s Council on Bioethics appear justiied:
Selecting for desired traits inevitably plants speciic hopes and expectations as
to how their child might excel. More than any child does now, the ‘better’ child
may bear the burden of living up to the standards he was ‘designed’ to meet. The
oppressive weight of his parents’ expectations – resting in this case on what they
believe to be undeniable biological facts – may impinge upon the child’s freedom
to make his own way in the world.
(President’s Council on Bioethics 2003: 55)
An ideal of parental love like the one I uphold here is more modest than
the ‘unconditional love’ frequently referred to in literature (Davis 2008;
Fox 2008). Unconditional love would require parents to accept, value
and maybe even enjoy children who are developing in morally unaccept-
able ways, or children who failed to learn enough about reciprocity
and cooperation to develop any mutuality in relationships, or children
so deeply distressed or depressed that looking after them well requires
exceptional resourcefulness. I am agnostic on the possibility and desir-
ability of a parental love so unconditional that the parent values and
accepts their children in spite of the children’s serious moral shortcom-
ings. I make the more modest claim that adequate parents will not give
reasons to their children to feel that their parents’ love is conditional on
features such as looks, intellectual abilities and even temperament. Such
features certainly include most, if not all, of those that are usually con-
sidered in the context of selection and enhancement: higher intelligence,
better memory, perfect pitch, calmer temperament, sunnier disposition,
greater ambition (President’s Council on Bioethics 2003: 37).
A child’s knowledge that her parents have selected or enhanced her is
likely to impact on her secure sense of being loved for who she is. The
suspicion that her – selected or enhanced – features are partly deter-
mining her parents’ love is very likely to creep in. Equally important is
the question of whether selected or enhanced children would feel overly
responsible for their parents’ happiness. Arguably, children who know
they are very gifted in whatever way because their parents wanted them
to be certain kinds of people or to successfully pursue particular activ-
ities, will feel the burden of parental expectations and, with it, a dimin-
ished freedom from ‘existential’ responsibility to be whatever they wish
to be or do whatever they wish to do. Because children are so emotion-
ally attached to their parents, and dependent on their parents’ approval,
parental desires tend to have an impact on children which is easily
 The parental love argument against ‘designing’ babies 159

underestimated. Finally, the spontaneous discovery and enjoyment of

the selected or enhanced features of the child would be, if not prevented,
at least diminished.
Enhanced and selected children will be affected in slightly different
ways. Enhanced children might feel that they were not deemed to be
good enough without the enhancement, while selected children will
know they would not have been born, had they lacked the feature for
which they had been selected. It is not clear which of the two situations
is worse from the point of view of the child’s interest in forming a secure,
personalised and fair attachment with her parents. Yet, children from
both groups will be likely to perceive the parental choice as a conditional
valuing of them and feel the burden of their parents’ expectations.
Allen Buchanan formulates the following worry: ‘the issue is whether
genetically designing children is or is not likely to lead to parents regard-
ing their offspring as manufactured items’ (Buchanan 2009: 146). I sug-
gest a slight shift in the perspective from which this worry was raised, by
saying that it is important whether children themselves would be likely
to feel they are, in their parents’ eyes, ‘manufactured items’. Parents’ and
children’s perceptions need not coincide. I assume that the main prob-
lem with regarding someone as a manufactured item, and with feeling
like someone’s manufactured item, is that, qua item, one’s role is to fulil
somebody else’s interests or desires. Others have pressed the Kantian
complaint that selection and enhancement may lead to treating children
as mere means and not as ends in themselves (Watt 2004). Here I raise
the objection that, to the extent that one perceives oneself qua another’s
manufactured item, one is unlikely to feel loved in the secure, personal-
ised and fair way outlined above. The two claims are clearly connected:
to love somebody involves having an interest that her own needs, or inter-
ests, are being met. Thus, to the extent that selection and enhancement
induce in children the worry that they are their parents’ manufactured
items, they are seriously detrimental to adequate parental love.
The claim is not that parents who select or enhance will necessarily fail
to feel, but rather that they will fail to express unconditional love for their
children. One can imagine that some parents who select or enhance their
children would come to love their children in fully accepting, spontan-
eous and non-controlling ways, that is, independently of the enhanced
features. Yet, by selection or enhancement, they have already sent the
message that they wanted a particular kind of child, thus inducing the
serious suspicion (to whoever knows that selection or enhancement took
place) that, in some way, their love is determined by those features. They
are also likely to have sent the message that they want the child to be
a certain kind of person, leading a certain kind of life. While such an
160 Anca Gheaus

expectation is legitimate as long as it refers to features all children need

for a good life – which means a few, thinly deined characteristics – it
is much more problematic with respect to very speciic features – as
are those that we are more likely to ever attempt to produce by genetic
technology.
For this reason, children themselves will be likely to feel less uncondi-
tionally loved and that in the loving relationships between children and
parents it will be more dificult to sustain the standards of acceptance,
freedom from ‘existential’ responsibility and spontaneous enjoyment
outlined above. But it is not unreasonable to also suppose that parents’
ability to love is favoured by a non-controlling attitude. Adequate paren-
tal love is incompatible with an excessively controlling attitude (i.e. par-
ents may legitimately use only the amount of control needed to ensure
proper, but not necessarily exceptional, development in children). Fox
(2008) elaborates on the argument that using genetic technology would
indicate a shortcoming of parental love by burdening the resulting chil-
dren with expectations and with parents’ own projects.
A child who knows it has been designed will, for that reason, occasion-
ally feel that the parent’s love is conditional. The past fact of designing
cannot be erased, and the message it sent is still there, inscribed into the
child’s body and personality.
One may object to this argument by saying that parents who use
enhancement could, and should, conceal this from their children. It is
true that parents often lie to their children in order to protect them; the
moral status of this practice is controversial even when the lie is about
something trivially connected to the child’s life, or when it concerns a
regretted parental mistake. Lying to children about the use of enhance-
ment seems particularly problematic, since enhancements are done
intentionally and they affect children’s identity directly. It is dificult to
see how a principled endorsement of lying to one’s children about delib-
erate parental choices regarding the children’s features can be morally
acceptable.
John Davis has attempted to rebut the argument against selection from
unconditional love, saying that, in fact, unconditional love require parents
to ensure the best genes for their children. His argument is based on an
analogy with making a good endowment for one’s future child: Given the
choice, which good parent would not choose for her child a good endow-
ment, all other things being equal – for instance, if this did not cause
social injustice by upsetting fair distributions? But the analogy is mis-
leading because it presupposes that, like a good endowment, particularly
‘good’ genes are necessarily good for you, regardless of how they came
about. The question, however, is precisely whether having particularly
 The parental love argument against ‘designing’ babies 161

‘good’ genes, which you know have been selected for you by your par-
ents, is better than merely being free from ‘bad’ genes. I have argued that
the very fact that parents have chosen these genes for you – or, in the
case of selection, they have chosen you for these genes – can make your
life worse by making you feel unduly burdened with parental expecta-
tions, or even insecure with respect to your parents’ love. In the everyday
relationship between parents and children, the particularly ‘good’ genes
play a role that endowments do not necessarily play: they condition and
direct the expression of parental love and entail expectations that are
not obviously legitimate because they can be exceedingly burdensome.
Endowments can, of course, also come with such expectations. Unlike
genes, many endowments can be declined. Yet, to the extent to which it
is psychologically costly for children to decline them, endowments come
with burdening expectations and are objectionable for the same reasons
that make selected genes objectionable.

Harm to third parties?

To evaluate parental use of selection and enhancement one should also
consider the effect on parties other than the parents who ‘design’ their
children. I suggest that selection or enhancement for non-medical rea-
sons, if widespread, could harm people’s general ability to sustain lov-
ing relationships with their children by adversely affecting the ideal of
accepting and unburdening parental love.
Making selection and/or enhancement legally available for those ready
to pay for it would introduce (or, rather, amplify) conlicts between fair-
ness and care for one’s own child. Some of the enhanceable features are
positional goods. If many, or most, children of well-off parents would
have genetic advantages bought for them, those who do not will inevit-
ably be disadvantaged. As a consequence, parents who do not, although
they could afford to, use selection and enhancement to gain competitive
advantage for their children might be perceived as less loving (by the
media, by other parents, possibly by their own children). Widespread use
of selection and enhancement for non-medical reasons by afluent par-
ents, in combination with knowledge of this use, would put social pres-
sure on all afluent parents to conform.
Ironically, then, some of the non-selected or non-enhanced children,
as well as selected and enhanced ones, might feel less secure about their
parents’ love. The more widespread parental selection and enhancement
are, the stronger the expectation that afluent parents use genetic tech-
nology to buy competitive advantage for their children. It seems reason-
able then to see selection and enhancement as undesirable because of
162 Anca Gheaus

the risk of corrupting the social ideal of parental love. Unfortunately, in

some social environments in countries such as the USA the social ideal
of parental love already includes excessive ambition, expressed in relent-
less parental pursuits to give their children competitive advantage (Fox
2008).
This objection is not unique to selection and enhancement. Children
have always been intentionally shaped by their parents in a variety of
ways – through socialisation, education, choice of partner and, indeed,
through the use of medical services (Mameli 2007). I do not claim that
there is an important moral distinction between genetic and environ-
mental enhancement. Criticism of parental use of genetic technology
for ‘designing’ babies is grounded in the same reasons as criticism of
parents’ concerted efforts to shape, by environmental means, their chil-
dren’s characteristics beyond the usual range of normal functioning
(Agar 2004).
Hence, my argument entails that parents’ environmental choices
should also be limited if their children are to feel adequately loved:
secure and unburdening love is not compatible with parents’ insist-
ence, and utmost efforts to ensure, that the child becomes very good
at, for example, mathematics, or sports, or piano-playing. Equally, it is
not compatible with parental insistence and efforts to ensure that the
child leads a particular lifestyle (as regards religion, family, profession or
diet, for example). As I have argued, making one’s child feel responsible
for her parents’ happiness is incompatible with adequate parental love.
Therefore, both genetic and environmental shaping of a child, when
justiied as a way of promoting parents’ well-being, enabling them to
satisfy deep-seated desires about how their children turn out, is morally
objectionable.
Two premises play an important role in the argument of this chapter:
irst, that ‘designer babies’ would be very likely to feel that their parents’
love for them is at least partly conditional on the ‘enhanced’ features and
burdening them with parental expectations; and second, that the need
to feel adequately loved by one’s parents is important for all children.
These are largely empirical claims (although deining ‘adequate parental
love’ includes normative elements). It is the role of public conversation
(and of social scientists), rather than that of philosophers, to assess these
premises. Jurgen Habermas (2003: 52–3) has claimed that, in order to
decide whether enhancement by genetic means would be harmful to the
‘designed’ children, we should be able to say what it is like to be a genet-
ically enhanced person. Public discussion can help us to imagine what it
must be like, for example by analogy to people whose parents attempted
enhancement by non-genetic means of features such as looks, intellectual
 The parental love argument against ‘designing’ babies 163

abilities and skills or temperament. Examples could be those whose par-

ents put signiicant amounts of money, energy and persuasion into mak-
ing sure their child’s school or social performance was above average
when this did not seem to coincide with a desire of the child herself to
perform particularly well.
Further, explorations of widespread beliefs and personal testimonies
might help assess the importance of feeling loved unconditionally by
one’s parents relative to the importance of enjoying features (such as
memory, or mild temper, or a high IQ) that could be enhanced. This
would be a way to determine if, all things considered, genetic enhance-
ment or selection are harmful to children.

Conclusion
I have argued that using genetic technology to design non-moral and
non-medical features of one’s child is objectionable because the ‘designer
babies’ will have reasons to doubt their parents’ unconditional love; par-
ental love might be perceived as conditional on characteristics on which
love in general, and parental love in particular, should not depend.
Selected or enhanced children would be likely to be burdened with
inappropriate parental expectations and possibly miss out on some of the
spontaneity of their parents’ enjoyment of them, which is an important
facet of parental love. Because I assume that one of the most important
interests of children is to experience secure, spontaneous and fair paren-
tal love, this amounts to harm.

Acknowledgements
While writing the last version of this chapter I have beneited from a De
Velling Willis Fellowship at the University of Shefield. I am grateful to
Matthew Clayton, Speranta Dumitru, Iseult Honohan, Ingrid Robeyns,
Anders Schinkel and Daniel Weinstock for interesting discussions on
earlier drafts.

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11 The press and the public interest

Joachim Allgaier

Journalistic mass media are an important and for some people the only
source of information about biomedical and scientiic developments.
How the media treat these topics hence frames the public debate about
the ethical and legal issues regarding medical applications and technolo-
gies. However, the inter-relationships and inter-dependence of scien-
tists and researchers, journalists and the public are more complex and
require deeper investigation. What may appear as objective reporting of
facts is often more subjective and hence prone to socio-cultural and pol-
itical framings of the debates. In this chapter an overview is provided on
how research on science and technology in the media and public opin-
ion can contribute to a better understanding of public debates about
biotechnology.
Genetics and biotechnology started to become a controversial
topic in public debates and media coverage from the 1990s onwards.
Accordingly, a lot of research on news coverage and public opinion
related to biotechnology has been done during the emergence and con-
troversy phase of this technology (e.g. Gaskell and Bauer 2001; Bauer
and Gaskell 2002). Genetic manipulation and biotechnology became
a topic of mass interest in the mid-1990s in Europe, after genetically
modiied soy beans were introduced in Europe and the birth of the
irst cloned mammal, Dolly the sheep (see, e.g., Holliman 2004) was
announced in February 1997 (Hampel 2012). It was also around that
time that the debate around biotechnology settled into the distinction
between agri-food (green) and bio-medical (red) biotechnology. This
distinction had consequences for how the different technologies were
portrayed in the mass media and also for how they were perceived by
the public (Bauer 2005).
Biotechnology has changed dramatically since its invention. What
started as a method decades ago has turned into various applied tech-
nologies. Applications range from the industrial production of enzymes,
to the manipulation of plants and crops, from genetic screening to gen-
etic and stem-cell therapies, genetic ingerprinting and cloned animals
165
166 Joachim Allgaier

(Hampel 2012). Accordingly, the foci of coverage regarding gene research

and biotechnology have also changed over the years. While earlier studies
examined media coverage and public opinion towards genetic manipula-
tion per se, later studies have focused on particular areas of application
and coverage in particular media and communication channels.
However, it is important to note here that mass media do not report
neutrally about new technologies. They rather form a sort of public
arena in which particular aspects of new research and research applica-
tions can be discussed and various actors are taking part in the debates.
In the context of the mass media, journalists so far have played a par-
ticular role as gatekeepers, whereas the audience has remained rather
passive. Particularly in the natural sciences it is often assumed that the
media, meaning mainly journalists, create the public image of science
and research, technologies and their effects. The role of the media and
its inluence on decision makers and public opinion is also insinuated in
the ield of biological and biotechnological research and medical genet-
ics (Ruhrmann 2012). The scientiic establishment has not always been
content with the way the topics of biotechnology and genetics have been
covered by the mass media. In the UK, a speciic science media centre
has been established as a remedy for inaccurate and distorted coverage
about biotechnology and to convey more precise and accurate coverage
about genetics, biotechnology and other research in the media (Callaway
2013). However, other actors, such as environmental non-governmental
organizations or churches and other religious groups, are also doing pro-
fessional public relations work in order to inluence media coverage and
public opinion with the long-term goal of changing public policies.
It must also be stressed that research on journalistic news media is not
suficient if one wants to understand public images of and public opin-
ion about biotechnology and applications of genetic research. Moreover,
it is also important to get an understanding of how this kind of research
and the applications that are stemming from it are represented in popu-
lar culture (Turney 1998; Maio 2006) and entertainment media (Condit
2001; Görke and Ruhrmann 2003). For instance, it is often believed
that images of biotechnology and genetics in soap operas, comic books,
blockbuster movies such as Jurassic Park (Ten Eyck 2005), and novels
such as Ken Follet’s The Third Twin can also have an impact on what
citizens think and how they feel about genetics and biotechnology. It has
been documented that classic novels such as Mary Shelley’s Frankenstein
or Aldous Huxley’s Brave New World have served as cultural reference
points from the early days of genetics up to the present day (Turney
1998). So far the research on genetics and biotechnology in the media
has mainly focused on conventional news media (and particularly on
 The press and the public interest 167

journalistic print media), but the study of genetics and biotechnology in

popular and entertainment media is still a neglected research area where
more work remains to be done for a better understanding of the issue
(see, e.g., Dijck 1998; Condit 1999).
Furthermore, media infrastructure has changed dramatically in the
recent two decades and has moved away from the one-way communi-
cation model of the traditional mass media to more dialogic commu-
nication models of contemporary online media (Brossard 2012). This
means that the ilter function that the journalistic mass media had loses
weight in the era of dialogic social online media and, moreover, it is
not the mass media alone that sets public agendas any more (Hampel
2012). The role of media consumers has also changed. Individuals
are increasingly turning to online environments to ind information
about science and to follow speciic scientiic developments. They can
search actively for issues and topics relevant to their personal inter-
ests. Compared to the passive consumption of traditional mass media
content this assigns citizens a more active role for consuming infor-
mation about science. In addition, many Internet users do not only
use the web receptively but they are also creating and disseminating
user-generated content themselves, with all kinds of different agendas
and worldviews in the background. It is therefore crucial for scien-
tists, scientiic institutions and science communicators to think about
how science can and should be communicated in online environments,
how to engage with citizens online, and how destructive images of
biotechnology and the life sciences can be countered in social media
(Brossard 2013).

Media coverage of biotechnology and genetics

From the 1970s onwards there was a constant rise of mass media cover-
age of biotechnology and genetics (Nisbet and Lewenstein 2002; Hampel
2012). By the end of the 1990s coverage of biotechnology was strongly
science-centred: about two-thirds of the topics related to biotechnology
discussed in the media were scientiic topics. The discussion of polit-
ical and ethical questions remained in the background during that time.
Various studies also emphasized that scientists were the main actors and
sources who appeared at that time in the coverage (see, e.g., Petersen
2001; Anderson 2002; Hampel 2012). An international comparison of
coverage of biotechnology in opinion-leading newspapers by Kohring,
Görke and Ruhrmann (1999) found that there was a common tendency
in the coverage to underline the potential utility of medical applica-
tions and that the coverage of potential risks was more or less neglected.
168 Joachim Allgaier

Petersen (2001) added that stories of hope and promise appear regu-
larly in printed news media coverage about (medical) genetics, and that
geneticists were often depicted as warriors and heroes.
It also turned out that coverage of biotechnology on television differed
from coverage of biotechnology in the press because in popular science
programmes on television only topics that can be visualized adequately
had news value. Television journalists often considered many topics
about medical biotechnology and molecular medicine as too complex
for a mass audience to visualize and understand (Ruhrmann 2012). That
is one reason why there is generally more print media coverage on bio-
technological topics and also why scientiic information concerning bio-
technology is often disseminated in textual form (Bromme and Kienhues
2012).
All in all, the coverage of medical genetics has been favourable (Condit
2001). However, in the second half of the 1990s, debates focusing on
risk, ethics and liability emerged to a noteworthy extent (e.g. Nisbet and
Lewenstein 2002; Hampel 2012), related for instance to topics such
as cloning (Haran et al. 2007) and green biotechnology (Gaskell et al.
2003). The consideration of negative social, economic and ethical elem-
ents has increased over time. However, medical (red) biotechnology was
still generally reported with a positive slant and associated with pro-
gress and had less controversial coverage than that for green biotechnol-
ogy concerning agricultural crops and genetically modiied food (e.g.,
Condit 2001). Research on stem cells emerged as a controversial topic
at the end of the 1990s and continued to be controversial, particularly
when embryonic materials are needed for the research (e.g., Ten Eyck
and Williment 2003). Still, the reporting on medical biotechnology had
its focus mostly on the beneits and utility of medical applications for
society, while potential risks of these emergent biomedical technologies
were often not mentioned or sidelined in media reports (Ruhrmann
2012). The way in which genetic research was covered was often per-
sonalized and based on speciic events, but human-interest angles and
emotions are also important news factors for journalists (Schäfer 2007;
Ruhrmann 2012). Important ‘trigger events’ for coverage were, for
instance, the announcement of the irst cloned sheep by British scientist
Ian Wilmut (Weingart, Salzmann and Wörmann 2008), the completion
of the Human Genome Project (Nerlich, Dingwall and Clarke 2002)
or the scandal around the South Korean stem-cell researcher Hwang
Woo-Suk when it emerged that many of his data on somatic cell nuclear
transfer were fabricated (Kitzinger 2008). The patterns of reporting
are complex and hard to anticipate, and they reveal different courses
depending on the kind of technology and value sensitivity (Weingart,
 The press and the public interest 169

Salzmann and Wörmann 2008). Here it is important to note that many

of the events that ‘triggered’ news coverage were staged for the public or
particularly the mass media on behalf of scientiic institutions (Schäfer
2007). Orchestration and professional public relations work on the part
of science has been documented in various cases and science communi-
cation researchers are taking this as evidence that genetics research and
the life sciences in general are also in the process of becoming increas-
ingly ‘medialized’ (Rödder 2009).
Various topics emerged over the years, such as DNA testing to diag-
nose or anticipate hereditary diseases, the discussion about reproductive
versus therapeutic cloning particularly after the Hwang scandal, gene
therapy, privacy and the opposition to employers’, governments’ and
insurers’ use of personal genetic data. Topics such as xenotransplant-
ation or synthetic biology have generated little mass media coverage so
far (Hampel 2012). However, Schäfer (2007) and others reported that
negative evaluations of these topics in the media were still rare and that
most of them could be found in coverage concerning stem-cell research
and the use of embryonic materials.
It has also been found that national cultural contexts can have an effect
on how red biotechnology topics have been covered. For instance, Reis
(2008) compared newspaper coverage of stem-cell research in the USA
and Brazil between January 2001 and March 2005. While coverage of
political, ethical and religious aspects was the centre of attention (86 per
cent) in the USA, only 44 per cent of the articles in Brazilian newspapers
were concerned with such aspects. In contrast, much of the Brazilian
coverage contained the rhetoric of medical breakthroughs and a dom-
inant discursive media frame was about scientiic progress. During this
time the political and ethical debate about stem cells raged in the United
States, while in Brazil various successful research results in the stem-cell
area were achieved.
It has also been suggested that the results of (medical) genetics and
biotechnical research have often been ‘hyped’ in the news media and rep-
resented inaccurately, and that exaggerated claims have been made in the
media (Geller, Bernhardt and Holtzman 2002). An investigation of daily
newspaper reporting of gene discoveries and associated technologies
in Canada, the United States, Great Britain and Australia (Bubela and
Caulield 2004; Caulield 2004), however, found that the print media
coverage was ‘surprisingly’ accurate and that it often conveyed a message
that was mainly created by the scientiic community itself. The research-
ers also found an overemphasis on the beneits of genetic discoveries and
an under-representation of risks in newspaper articles, but also in the
scientiic articles that they examined.
170 Joachim Allgaier

Coverage about green biotechnology generally focuses more on risks

than the coverage of (potential) medical applications of biotechnology
(Hampel 2012). This trend has been conirmed by various studies. For
instance, a study by Marks et al. (2007) that investigated mass-media
coverage of medical and agricultural biotechnology over a 12-year period
in the United Kingdom and the United States found that diverse biotech-
nologies have been framed differently: medical applications have been
framed more positively in the coverage, agricultural biotechnology more
negatively (see also Ten Eyck and Williment 2003; Bauer 2005). The
authors concluded that this way of framing topics can result in different
public perceptions of biotechnology, with negative or ambivalent views
for agricultural and positive views for medical applications (Marks et al.
2007). Various studies have conirmed this notion. For instance, a case
study from Switzerland (Bonfadelli, Dahinden and Leonarz 2007) inves-
tigated media coverage of genetics in Swiss newspapers and conducted
surveys and focus groups on the public perception of biotechnology.
They found that a dominant media frame for medical (red) biotechnol-
ogy was based on the idea of (scientiic and societal) progress and that
this frame put red biotechnology in a positive light and linked it with
advantages for health and society. Green biotechnology, in contrast, had
been framed in more ambivalent, sceptical and even outright negative
terms and it was often also called to public account in the media. The
results from the focus groups showed a clear difference between attitudes
towards medical versus green applications of biotechnology. While med-
ical applications were evaluated in a continuum between ambivalent and
positive, agricultural applications were mostly rejected. Survey data also
conirmed that Swiss citizens judged the different applications of bio-
technology in different ways. Red biotechnology was evaluated far more
positively than green biotechnology. While red biotechnology was seen as
being useful and morally acceptable, green biotechnology was not seen
as useful, without practical beneits, risky and morally unacceptable. An
interesting result of this study is that 40 per cent of those in favour of
biotechnology stated that media coverage had inluenced them to view
biotechnology even more favourably, while 44 per cent of those who
opposed biotechnology shifted towards viewing it even more negatively.
The authors assert that both groups seemed to view the media as having
reinforced their attitude. They concluded: “the intense public contro-
versy did not result in an anti-science shift, but, instead, led to increasing
awareness and public understanding of biotechnology as a complex sci-
entiic topic” (Bonfadelli, Dahinden and Leonarz 2007: 123).
However, the precise connection between public opinion and mass
media portrayals of genetics is not yet fully understood. Ten Eyck (2005),
 The press and the public interest 171

for instance, compared survey data collected in the United States with
media coverage of genetics and biotechnology in two newspapers in
the United States. He found that a one-dimensional media effect is not
occurring and that slants in the media do not predict public opinion. Ten
Eyck rejected the assumption that there are causal links between media
discourses and public opinion, because audiences use various interpret-
ative ilters and may not only be inluenced by journalistic media, but by
online content, entertainment media, popular culture and other accounts
as well. However, at the same time, he wrote that it is also not possible
to argue that no such relationship between the media and public opinion
exists (Ten Eyck 2005).
It is therefore generally assumed that various factors inluence the
attitudes of citizens to medical genetics. Some factors that are often
mentioned in this context are, for instance, the educational level and
knowledge about science, political orientation and religiosity. Here vari-
ous studies have found a link between religious beliefs and attitudes
towards emerging technologies in general, to things genetic and the
manipulation of life in general (see Allum et al. 2013). However, the con-
nections between these factors are complex and not straightforward. For
instance, in a study about public attitudes towards stem-cell research in
the United States, Ho, Brossard and Scheufele (2008) found an inter-
action between political ideologies on the one hand and religious convic-
tions and the relationship between knowledge of and attitudes towards
stem-cell research on the other hand. In obtaining more knowledge about
stem-cell research people with a politically conservative world view and
people with strong religious convictions oppose stem-cell research more
strongly. People with a liberal political attitude, in contrast, rather sup-
port stem-cell research with the more knowledge they gain about it.
Based on this and other studies Allum et al. (2013), using statistical
analyses of survey data, examined the idea that strong religious commit-
ment might act as a ‘perceptual ilter’ through which citizens acquire and
use scientiic knowledge in the formation of attitudes towards medical
genetics in the British context. They found that citizens’ religious beliefs,
to some extent, mirror the concerns of religious institutions about gen-
etics and genetic testing of unborn babies in particular. Also, people who
hold creationist beliefs are less optimistic about the future developments
of medical genetics. However, there is no clear relationship with religious
beliefs when it comes to the personal willingness to take genetic tests.
Allum et al. (2013) found evidence that religion can act as a ‘perceptual
ilter’ for attitudes towards genetic testing, but not for general optimism
about medical genetics. Religious people that are highly knowledgeable
about science tend to have more negative attitudes toward genetic testing
172 Joachim Allgaier

than those who say that they are less scientiically literate. These indings
support the idea that people’s predispositions can affect the way in which
information is processed and adapted and attitudes are formed. In gen-
eral scientiically literate people are more supportive towards genetics,
but this is not necessarily the case for religious people. Even though there
is also support among religious citizens for genetic research, strongly
religious people who are knowledgeable about science do not show more
support for genetic testing and research. A potential practical implica-
tion of this inding is that trying to enhance public understanding of the
science of genetics in a group of strongly religious people is likely to fail
in precisely the group that is most likely to object to medical genetics
(Allum et al. 2013).

Public opinion and attitudes towards genetics

biotechnology
In general laypeople do not use scientiic knowledge for the same reasons
as scientiic experts. Often they are looking for orientation and solutions
for concrete everyday problems in order to reach reasonable decisions
(e.g., Bromme and Kienhues 2012). Therefore the public interest and
expectation on science is that it provides secure knowledge, solutions
for problems and also new ways of treatment and therapies for severe
diseases and disorders. It is likely that many citizens’ interest in genet-
ics and biotechnological research, therefore, focuses on health-related
aspects, be they innovative new therapies or ways of avoiding personal
health problems. Journalists generally anticipate readers’ interests and
that might be a reason why science news in general has become increas-
ingly ‘biomedicalized’ (Bauer 1998). Although reports about genetics in
the mass media should not be seen as an accurate relection of what
members of the public are actually thinking about it, they can still con-
stitute key social issues that affect public policy and decision makers
(Condit 2001).
Various studies and surveys have tried to shed light on what members
of the public think about genetics and biotechnology. It has been found
that the various applications of biotechnology are perceived and evalu-
ated very differently. Somewhat bluntly put, the message is that red bio-
technology is accepted by the majority of the population in Europe and
the USA, but a large proportion of the population rejects or is much less
enthusiastic about green biotechnology (Hampel 2012). For instance, in
2002 it was found in a representative survey in Germany that the popula-
tion has a positive attitude towards medical biotechnology. Sixty-four per
cent thought that advances in biotechnological research will lead to great
 The press and the public interest 173

medical progress; and 62 per cent said they were willing to use pharma-
ceuticals that are the result of genetic modiications (Wieland 2012). All
in all, various surveys showed that the German public has a differentiated
view towards various ields of biotechnical applications. Health added
the value of legitimation to red biotechnology. There is strong afirm-
ation for diagnosing hereditary diseases and the use of biotechnology
for the production of innovative pharmaceuticals, but a large proportion
of the population oppose the genetic modiication of crops and speak
out against genetically modiied organisms in their food. This picture is
similar all over Europe, but in Germany, biotechnological applications
for human beings sparked particularly lively debates and faced strong
opposition since they are regarded as particularly problematic in ethical
terms. This debate has its roots in the country’s history of eugenics and
unethical research on human subjects in Nazi Germany (Jasanoff 2005).
This historical legacy has contributed to the trouble stem-cell research-
ers have had in general in Germany and to the opposition to embryonic
stem-cell research in particular (Fundación BBVA 2008).
Considerable public controversy was also created by research using
embryonic stem cells in the United States. Here many people’s attitudes
were strongly related to their religious worldview and moral principles.
However, public support for medical research that uses stem cells from
human embryos has grown since 2002 in the United States (National
Science Board 2012). Since 2004, a majority of the public (63 per cent)
has supported stem-cell research. There is even more support (71 per
cent) for stem-cell research that uses stem cells from sources that do not
involve human embryos. Americans strongly oppose cloning when there
is no medical purpose mentioned. In 2010, eight out of ten Americans
rejected the idea of cloning or genetically altering humans. However,
support for cloning technology for medical research and treatment
has been growing with 55 per cent in favour and 40 per cent opposed
(National Science Board 2012). In this context it is worth noting that
the number of Americans who said they comprehend the difference
between reproductive and therapeutic cloning in 2008 was lower than in
previous surveys and also that the self-assessed understanding of stem-
cell research declined between 2008 and 2010 (National Science Board
2012). Another issue for Americans is the use of genetic information.
A survey conducted in 2007 (Genetics and Public Policy Center 2007)
found that the majority of Americans ‘enthusiastically’ supported genetic
testing for research and health care. However, concern was expressed by
a large majority (92 per cent) who feared that results of such tests could
be used in harmful ways. A majority stated that they would trust doctors
and genetic researchers to have access to genetic test results. But, there
174 Joachim Allgaier

is serious concern and distrust about discrimination that could result if

insurers and employers get hold of and use results from citizens’ genetic
tests.
In Britain, green biotechnologies have also received much less public
support compared to red biotechnology (Gaskell et al. 2003). However,
according to the Wellcome Trust Monitor survey (2009), the UK pub-
lic was overwhelmingly positive about medical advances through gen-
etic research: in 2009, 86 per cent said they were either somewhat or
very optimistic. In the second survey wave in 2012 enthusiasm was still
high: 79 per cent of young people and 80 per cent of adults stated that
they were optimistic that in the next twenty years developments in gen-
etic research would improve health care. At the same time, the level of
self-assessed understanding of the relevant science varies. Citizens often
think that it is the role of scientists and researchers to know and decide
about genetic research and a majority of citizens (57 per cent) said that
they did not personally want to be involved in public consultations about
medical research. While 60 per cent of adults said that they had a ‘good’
or ‘very good’ understanding of the term ‘DNA’, only 11 per cent said
their understanding of the term ‘human genome’ was good. In the cases
of ‘genetic modiication’ (34 per cent) and ‘stem cells’ (31 per cent)
about a third of questioned adults said their understanding of the term
was very good or good.
Particularly helpful for the understanding of public opinions about
biotechnology in Europe are the regularly conducted Eurobarometer
surveys (European Commission 2013) on public attitudes towards bio-
technology that the European Commission has coordinated since 1991.
For instance, a key result of the fourth Eurobarometer survey carried
out in November 1999 suggested that Europeans clearly distinguished
between different applications of biotechnology. They were supportive
of biomedical applications of biotechnology (e.g., genetic testing and the
production of pharmaceuticals), but have increasingly become opposed
to genetically modiied food and the cloning of animals (Gaskell et al.
2000). Another interesting inding of this survey is that the cloning of
human cells and tissues for medical purposes received moderate support,
but the cloning of animals for medical purposes was widely rejected.
However, even the most favoured applications (genetic testing and medi-
cines) were also troubling, even to those who expressed support (Gaskell
et al. 2000).
The Eurobarometer 2002 survey on Europeans and biotechnology
further documented support for biotechnology and showed that 43 per
cent of Europeans were optimistic that biotechnology would improve
their way of life, 17 per cent were pessimistic, 12 per cent said it would
 The press and the public interest 175

make no difference. Optimism in biotechnology had increased and

Europeans continued to distinguish between supported medical applica-
tions and rejected agricultural and food applications. In this survey it is
the exploitation of genetic information that was a source of concern for
many Europeans. Access to genetic information by government agencies
and by commercial insurance was largely regarded as unacceptable.
Three years later the Eurobarometer 2005 survey showed that
European citizens were increasingly optimistic about biotechnology,
more informed and more trusting of the biotechnology system. This has
to do with the trust in the state and the legislation that is supposed to
regulate genetic research. There was still widespread support for med-
ical applications and opposition to agricultural biotechnologies in all but
a few countries. Gene therapy was perceived as useful to society and
also morally acceptable. There was also support for embryonic stem-cell
research across Europe, but citizens tend to be more supportive of non-
embryonic sources of stem cells. Citizens in this case felt it important
that stem-cell research was tightly regulated (Gaskell et al. 2006).
Regulation of new technologies was also an issue in the following
Eurobarometer 2010 survey. Europeans expected appropriate regulation
and opposed the reliance on market forces. While in the United States
the regulation of research on embryonic stem cells was still a public con-
troversy, 63 per cent of Europeans now supported human embryonic
stem-cell research and there was a similar level of support for gene ther-
apy. Europeans did not only solidly support medical applications, they
were also approving of non-therapeutic applications. Fifty-six per cent
of European citizens approved of research for enhancing human per-
formance without medical indication. However, approval was contingent
and dependent on adequate regulation by the state. The contrast in the
public reception of red and green biotechnology was greater than ever:
opponents of green biotechnology outnumbered supporters by 3 to 1
and there is no country where there was a majority of supporters of agri-
cultural and food biotechnologies (Gaskell et al. 2011).

Outlook
In order to understand public debates about legal and ethical issues
associated with particular technologies it is crucial to take into account
how these technologies have been covered by the mass media. It is likely
that the way the mass media cover particular scientiic and biomed-
ical topics and related technologies has an inluence on what the public
knows and thinks about them. It seems that the European and American
public – despite some ethical and political controversies – have largely
176 Joachim Allgaier

embraced and welcome medical applications of biotechnology. In gen-

eral this seems to correspond with favourable news coverage about red
biotechnologies. However, this is a rather general and supericial picture
of the relationship between public opinion and media coverage of genet-
ics and biotechnology. As mentioned at the beginning of the chapter, it is
important that future research on this relationship takes into account the
impact of entertainment media and popular culture. Further research is
also needed on the move from traditional one-way mass media reception
to the more active roles of recipients in online environments and if and
how this move changes the attitudes of citizens towards medical genetics
and red biotechnology.
Another departure point for further research is that the term red bio-
technology is too comprehensive and does not allow for differentiation
between particular medical applications. Therefore we will hopefully see
more studies that investigate how particular biomedical applications of
biotechnology are treated in the media and are perceived by the pub-
lic. Here it is also probable that it becomes more dificult to determine
what actually counts as a medical application of biotechnology. The
health science research community already discusses what they call a
‘third revolution’ – the convergence of life sciences, physical sciences and
engineering – in health science research (MIT 2011).
Given the favourable coverage that medical biotechnologies seem to
have received so far it might also be the case that some people are disap-
pointed if the anticipated breakthroughs and promised new treatments do
not materialize – a possible consequence of very positive news coverage. At
least one recent article in the UK broadsheet The Observer has asked ‘Stem
cells: What happened to the radical breakthroughs?’ (Roach 2013).

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12 The inescapability of knowing and inability
to not know in the digital society

Richard Watermeyer

Introduction
This chapter considers the notions of ‘knowing and not knowing’ and
the ‘right’ either way in the context of knowledge produced in an era of
information/scientiic transparency, openness and ubiquity; knowledge
co-production; and upstream science governance – characterizations per-
petuated through the global proliferation of information communication
technologies. The protagonist, or antagonist of discussion, is ‘dialogue’
and the two or multi-way conversations that exist between multifari-
ous public constituents and constituencies through which information
lows and knowledge emanates. Discussion focuses speciically on dia-
logue produced and reconstituted in online and/or digital realms and the
notion of a polylogue – an ininitely populating lattice of informational
conversants or carriers unimpeded by the fetters of geographical separ-
ation or time – so prodigious and diffuse and so successfully networked
and recruited, that the individual is impotent to disengage from know-
ledge transactions. In this context the right to know or not to know is not
only diminished but effectively neutralized. In this chapter the polylogue
is approached, in the irst instance, as an enabler of the public’s right to
know but discussion moves on to consider how the digital society com-
promises, if not subjugates or entirely removes, the right of the citizen to
choose not to know.

The public, science and policy

In the UK in the 1990s, the relationship between science, politics and
the public was complicated by a series of embroilments involving the
bovine spongiform encephalopathy (BSE) crisis; concerns over genetic-
ally modiied (GM) crops; and measles, mumps and rubella (MMR) vac-
cinations. The 1990s also marked a shift in the conceptualization of the
‘public understanding of science’, moving from a focus on ‘understand-
ing’ to ‘engagement’ (Bauer et al. 2007). A House of Lords deposition

180
 The inescapability of knowing in the digital society 181

(2000) reported a ‘new mood for dialogue’ and an emergent discourse of

‘science and society’ where the public’s relationship with science was re-
envisaged as less cursory and more conident and critical than had been
previously courted. This transition marked the emanation of the public
wanting not only to ask questions of science but ‘have their voices heard’
(Stilgoe and Wilsdon 2009: 20). In this evolving context, the public’s
relationship with science reconigured from passive recipients to active
collaborators.
A turn towards ‘upstream’ engagement (POST 2006; Rogers-Hayden
and Pidgeon 2007; Royal Society 2006; Wilsdon 2004; Wilsdon, Wynne
and Stilgoe 2005) instigated an expectation that forms of interaction
between scientists and public communities, traditionally top-down
and transmission-based, change to become participative and bilateral;
with the public instated as scrutineers and consultants active from the
inception to the conclusion of the knowledge-generation process. Going
‘upstream’ represented a direct challenge to a ‘deicit’ paradigm of the
public’s understanding of science, identiied within the Royal Society’s
Bodmer Report of the mid-1980s, which characterized the public as for
the most part scientiically illiterate, detached and disenchanted (Irwin
1995; Irwin and Wynne 1996; Wynne 1996; Gregory and Miller 1998),
and lay knowledge as incommensurate with and inferior to scientiic
expertise; disqualifying the lay public from participating in issues of sci-
entiic governance (Wynne 2003). Conversely, proponents of upstream
engagement promulgated the eficacy of lay knowledge or ‘lay expertise’
and the contribution of lay experts in the advancement and regulation of
new science and technology (Irwin and Wynne 1996), particularly where
social, cultural and ethical concerns and critiques were conspicuously
unattended and absent. The intercession of lay experts in matters of sci-
entiic interest was therefore intended as a means to make science more
socially robust. The aspiration of public/scientiic synergy was accord-
ingly argued by science, technology and society scholars to begin by irst
recognizing ‘the luidity, porosity and constructedness of the boundar-
ies established between them’ (Wynne 1996: 62). These scholars antici-
pated that upstream engagement would cause scientiic and public
communities to develop a more luent and stable basis for collaboration,
thereby dispelling what Wynne (1996) referred to as the ‘scientiication’
of issues with notable normative and political aspects. In the upstream
vision, the public voice would be endorsed as a licensed authority cap-
able of making an active and substantial contribution to the prolifer-
ation of new scientiic epistemologies and what Jasanoff (2005) called
‘civic epistemologies’. Lay experts were consequently reframed not only
as competent handlers of scientiic knowledge (Durant 1999) but also
182 Richard Watermeyer

able contributors, concurrently dismantling the ediice of scientiic tech-

nocracy and universalizing an opportunity for public choice in matters of
scientiic governance and policy.
The purpose of increased public involvement in science govern-
ance was also predicated on ‘substantive’ and ‘instrumental’ rationales
(Fiorino 1990) – ‘substantive’ in that lay determinations of science were
seen to proit decision making (Fischer 2005; Stirling 2006), ‘instrumen-
tal’ in that the manifestation of the public’s involvement would conirm
the openness of scientists to public scrutiny and the legitimacy of scien-
tiic process (Marris et al. 2001). Upstream advocates furthermore cor-
related the mobilization of the public as a critical voice or critical friend
of science to what Funtowicz and Ravetz (1992) called ‘extended peer
review’ or a means of reconciling issues of scientiic risk and as a cata-
lyst enabling scientists to be more relexive, proactive and prospective in
delivering on public needs.
A dialogical interface between expert and non-expert public groups
continues to be popularized as a mechanism that:
• liberates science from the insularity, secrecy and technocracy of scien-
tiic governance (see Jasanoff 2005; Bucchi 2009);
• makes science relevant, user-friendly and integral to public discourse
and by extension justiies and sustains the work of scientists and con-
siderable tranches of dedicated public funding (Wilsdon and Willis
2004);
• catalyses new forms of knowledge worker – the ‘public intellectual’
(Burawoy 2005) and ‘citizen scientist’ (Bonney and LaBranche 2004)
• concomitantly enriches and diversiies the perceptual horizons of
science; and
• facilitates economic prosperity through an integrated, luid, multi-
interfacing network and ‘information/network society’ (Stehr 2002;
van Dijk 2006; Fuchs 2007).
This is the reported potential of dialogue. However, a closer inspection
reveals a multitude of inconsistencies that challenge the patently prom-
issory rhetoric of upstream engagement and reveals what I refer to as a
false dawn of dialogue in public engagement in science and technology
(PEST). Despite the ubiquity of scientiic and technological knowledge,
which Stehr (2002) comments as having penetrated every sphere of pub-
lic life; the materialization of an information abundant, ‘network’ soci-
ety (Castells 2000; van Dijk 2006); and the democratizing potential of
new 2.0 online media platforms that facilitate ‘individuals making active
information-seeking choices’ (Priest 2009: 224), lay experts arguably
remain deicit members within the public/science interface, devoid of
 The inescapability of knowing in the digital society 183

‘intellectual capital’ (Bourdieu 1998) and ironically displaced by ‘infor-

mation poverty’ (Haider and Bawden 2007). The potential of dialogue
as a democratizing principle is furthermore constrained by upstream
detractors who signpost a raft of factors for resisting dialogue, such as
high inancial cost (Andersson et al. 2005); the unpredictability of pro-
cess and outcomes (Oakley 1991); uncertainty and risk (Watson 2007);
inappropriate use of experts’ time (Taverne 2005); and a failure to deliver
on the rhetoric of social inclusion, social cohesion and democratic gov-
ernance (Cooke and Kothari 2001).
Whilst there remains continuous investment in public dialogue as a
democratic intervention fostering more knowledgeable science citizens
and better science policy, evidenced most especially in the UK through
the ‘Sciencewise’ programme, these kinds of excursions into the public’s
scientiic literacy are compromised by environmental and budgetary lim-
itations, where conducted face-to-face. A major issue for public dialogue
activities is that the interactions they spawn are restricted by issues of
geography and time. Public dialogue projects may be frequently isolated,
unconnected and ostensibly supericial or impoverished processes in
knowledge creation and transaction. These are closed events, less proc-
esses of dialogue, where processes are taken to be continuous and evolv-
ing. The potential pathway to greater knowledge through interactional
and creative collective deliberation may be also intentionally forestalled
and regulated according to the interests, sensitivities and investment
of dialogue sponsors whose control and choreography of the informa-
tional basis of dialogue is intimate, unwavering and rehearsed. A route
to expediting and unshackling the low of information and therefore the
contestation; revision and co/re-production of new knowledge and the
faculty of choice among citizens as knowledge agents, potentially occurs
in a different interactional context – the World Wide Web.

Mobilizing the right to know: the polylogue

In the age of the Internet, information is both ubiquitous and instant –
instantly populated, repopulated and instantly retrieved. Currently, Web
2.0 technology allows information and knowledge to be not only redis-
tributed but reinvented through participative frameworks (Watermeyer
2010). Experiential knowledge, or what Collins and Evans (2002) call
‘interactional expertise’, may occur within a new dialogue continuum
that disrupts the historic arrangements of scientiic power and authority,
identifying and drawing new rules for public dialogue. Web 2.0 thus rep-
resents a new dialogue eco-system which opens up the possibility of sci-
ence dialogue to different types of social actor with potentially disparate
184 Richard Watermeyer

socio-political orientations and frameworks. As a melting point for the

articulation of a myriad of social and ethical values, 2.0 instruments such
as blogs and Twitter postings present an opportunity for more informed
and agile science citizenship whilst concurrently enhancing the dissem-
ination pathways of scientists and the luidity of their interface with lay
expertise. The proliferation of virtual dialogue is, it would seem, evidence
of the dissipation of the siloing of knowledge, replaced instead with what
Dunleavy (2012) has called a ‘republic of blogs’.
As an interactional space the Internet is increasingly the modus oper-
andi for information exchange within the scientiic community, facili-
tating project management, conference organization and dissemination
(Trench 2009). Concurrently, as a repository of scientiic knowledge,
the Web has enlarged and diversiied scientiic readership by challenging
traditional publishing channels and pursuing open access in digital for-
mats of academic journals (Gartner 2009). Web 2.0 as a participatory
forum is also a means for scientists and scientiic institutions to commu-
nicate directly with public groups, bypassing the mediation of science
journalists (Chalmers 2009) and/or other knowledge brokers capable of
misrepresenting or prejudicing scientiic information. In the ‘social net-
works of science’ (Watermeyer 2010) the polylogue emerges. The poly-
logue differs from the dialogue in that it intimates not only a multiple of
conversationalists but a multiple of conversations occurring and regener-
ating at any one time. The polylogue may occur through a variety of com-
municative mediums evidenced in social network media such as blogs
and wikis, and further scaffolds, ameliorates and accelerates dialogue by
means of audio-visual facilitation and enhancement.
The social dimension of 2.0 technologies cannot be underestimated
in linking individuals and building dialogical communities of choice that
are global and continuous. Unlike formal dialogues which are in part a
process of event-making, one-off, stunted and fragmentary, the luidity
of online interactions provides for a more integrated, informed and efi-
cient republic of choice makers. Polylogues are also a means for multiple
elaborations of scientiic inquiry and a room for prolonged meditation,
facilitating not only the lay public’s but scientists’ choices. It is perhaps
no surprise that online social media are increasingly touted as a means
for scientists to increase the reach and signiicance of their work.
The polylogue thus represents a unique opportunity for the online citi-
zen to emerge as a scientiic citizen or citizen scientist in a counter-econ-
omy of dialogue, beyond the control and sanction of dialogue sponsors
and regulators wishing to contain and maintain oversight of the trajec-
tories and jurisidiction of dialogue and informational movement – or
ensure that dialogue is risk-averse and neutralizing. It is also within the
 The inescapability of knowing in the digital society 185

polylogue that science assumes a plurality of meanings and uses, deter-

mined and regulated by large numbers of self-governing lay experts. In
one way this is the realization of the dialogue ambition – intersecting
and overlapping discussion of science beyond science institutions – freely
bought into, dissected, deliberated and potentially even improved upon
by numerous if anonymous lay parties.
Where traditional forms of science dialogue suffer from the disequi-
librium of power and political capital, Web 2.0 may be seen to facilitate
non-hierarchical debate through a process of disintermediation, or, in
other words, the obsolescence of an overarching or repressive singular
dialogue framework, narrative, agenda and evisceration of the dialogue
moderator. However, online public dialogue in science is not without
risks or drawbacks.
Where the content of scientiic information is user generated the
potential for the misrepresentation of science enlarges and concurrently
the right of access to the ‘right’ knowledge. Content may be prone to
inconsistency or factual error caused by unscientiic, subjective inter-
pretations. It may also be manipulated by online authors seeking to align
scientiic ‘truths’ or re-imagine ‘facts’ to complement a partisan agenda
or personalized politics. A paucity of online regulation and the intract-
ability of 2.0 domains mean that the propagation of false science is a sig-
niicant risk and one which may further inure the credibility of scientists
and harm scientiic dialogue in its totality. Web 2.0 is also fertile ground
for the culturing of what Durodié (2003) calls the ‘quasi-expert’ and the
unfortunate emergence of bad science dialogue.
The polylogue may be inchoate, fragmentary and seemingly represen-
tative of a multitude of scientiic perspectives, but it may coalesce and
obsess around the same concerns treated in face-to-face dialogue. The
sheer abundance and heterogeneity of the digital public, the multitude
of its different, often competing and conlicting agendas may also cause
for dialogue and citizens’ knowledge choices to stall. Furthermore, sci-
entiic disagreement left unresolved by argument or referral to empir-
ical evidence may produce what Pellizzoni (2003a; 2003b) refers to as
‘radical uncertainty’. In this sense, the wealth of subjective accounts may
serve to thwart dialogue as much as enrich it, for the plurality of dialogue
agents or dialoguers may be so numerous as to make dialogue erratic and
incomprehensible. The polylogue as an online phenomenon may also
ultimately recruit the same scientiically inclined or interested individ-
uals that populate ofline events and in effect duplicate discussion. The
main difference is the supposed lack of a top-down moderator, whose
absence stimulates a more spontaneous, critically in-depth and relective
discussion. A lack of moderation makes the polylogue, in the shape of,
186 Richard Watermeyer

for example, a blog, not only a site of informal dialogue but ‘uninvited
dialogue’ where the critical voice of dissent, censured in oficial environs,
is given air.
Science in the public domain remains more often than not less dialogic
and more top-down. Indeed Irwin (2006) notes that deicit-informed
expressions of science continue unabated, conlated under the nomen-
clature of public engagement (see also Rathouse and Devine-Wright
2010). Others suggest that so-called dialogue exercises are actually a
camoulaged iteration of the deicit model (Lehr et al. 2007). The preva-
lence of a deicit model occurs perhaps as a consequence of unswerv-
ing conidence by policy-making and risk-managing institutions in
the methods of scientiic knowledge production. Inlated expectations
and over-reliance on the scientiic community has the effect of exclud-
ing alternative accounts of science that are relegated or disqualiied for
being ‘lay’. Despite the continued, high-proile investment in dialogue
processes1 the public appears no further forward in claiming a licence to
operate as accredited contributors of scientiic discourse and as choice
yielding agents.
The potential of informed choice making is compromised by a raft of
other structural and organizational tensions, inconsistencies and ironies.
Dialogue activities make sometimes impossibly high demands of their
participants to make fair and credible assessments, particularly where
public knowledge of new science is limited. Where science and tech-
nology is emergent, an information gap of public knowledge may cause
speculation, which, magniied by the media, may result in sensationalist
copy and hype. The early engagement of the public when science is for-
mative may be not only premature but alarm-inducing and cause what
Rogers-Hayden and Pidgeon (2007: 335) refer to as the ‘ampliication
of concerns about risk’. Debates may consequently focus more or less
exclusively around issues of scientiic risk. Upstream dialogue may in
this way result in issue making or the creation of imaginary or projected
concerns and increased if misplaced public anxiety. This may cause to
further increase the disconnect in the relations between scientists and the
public and may also cause dialogue to become increasingly a process of
scientists’ apologies or acts intended to diffuse the public’s anxiety.
The polylogue ultimately follows more faithfully the pursuit of the sci-
entist in asking new questions, rather than the policy maker in demand-
ing new solutions. It also importantly provides a space for ‘uninvited’
1
In 2012, the Sciencewise programme received an investment of a further £3.6m over a
three-year period from the UK Secretary of State for Business, Innovation and Skills,
Vince Cable. See http://blogs.bis.gov.uk/blog/2012/03/09/the-great-science-and-engi-
neering-adventure/ (accessed 9 April 2014).
 The inescapability of knowing in the digital society 187

dialogue. The question remains, however, how to mobilize ‘uninvited’

dialogue in ways that might bear pressure on organizational and govern-
ing powers. At root there remains the question of how ‘publics or coun-
terpublics’ (Warner 2005), emergent through multiple conversations, in
multiple contexts, in multiple times, can critically and constructively talk
to power and enact choices as public citizens and decision makers in
science.

Retracting the right to know

The ubiquity of oficial (expert-sanctioned) and unoficial (user-gener-
ated) science information that seeps through the porosity and perpetu-
ity of cyberspace presents the potential for ‘online-users’ – whose own
demographic may be equally polymorphous – to interface, appropriate,
triangulate and (re)purpose the informational cornucopia as increasingly
eficient and insatiable knowledge consumers. Indeed the intensiication
of the digital interface implies that public citizens as knowledge agents
are becoming more seasoned, versed and ostensibly more proicient and
dexterous in their navigation of the digital knowledge ecosystem. In fact,
it may not be premature to speculate a culture of connoisseurship, espe-
cially among future generations ‘born online’, as informational orien-
teers and diagnosticians of knowledge in online domains. The greater the
extent our lives are conducted online, the more likely we will calibrate
and modify our social behaviours and skills in alignment and comple-
mentarity with digital modes of knowledge production and knowledge-
based choices.
The copiousness and borderlessness of information transmission and
exchange is in this case matched by the limitless online activity of the sci-
entiic knowledge consumer, whose right to know is taken as a priori in
the context of a globally networked information society, where informa-
tion that interrupts and/or enriches pre-existing knowledge is instantly
and continuously accessible, thanks to SMART technology, from any
geographical location at any time.
Technological advances are increasingly and rapidly altering the behav-
iours and expectations of knowledge consumers. This is evidenced across
formal educational spheres, where students of every stage and with accel-
erating frequency are attending to the business of learning, primarily if
not exclusively, via technological/digital learning apparatus. With greater
investment by educational providers in forms of distance, online and
therefore mass teaching platforms such as Massive Open Online Courses
(MOOCS), the manner in which knowledge is distributed, shared and
produced is rapidly shifting from an accent on technologically enhanced
188 Richard Watermeyer

learning to technologically driven learning. The parameters of how we

learn and what we learn are consequently redrawn to complement the
rampant ascent of technology into every facet of our information-based
lives. Concurrently, the globalization and marketization of educational
systems, mobilized in large part through technological innovation, and
especially conspicuous in higher education contexts, has altered our rela-
tionship with learning, insomuch as learners are primarily categorized as
paying clients or customers of an educational experience. Consequently,
technological innovation has radicalized the experience of knowledge,
certainly in formal or credentializing contexts, and the way we view
ourselves in relation to the acquisition and handling of new knowledge.
Concomitant to this relational change is an attitudinal one, where tech-
nology is seen to have democratized and personalized knowledge. As an
example, personal genomic online providers such as 23andMe represent
the availability of opportunities for knowledge of the most speciic and
individual kind.
Technology has brought about the conditions with which information
can be accessed and shared openly, transparently and freely – without
restriction or censure. The idea of openness, in a normative democratic
stylization, is the zeitgeist and/or shibboleth of the second decade of the
new millennium, where rhetoric in science and policy settings equates
good, democratic and responsible scientiic enterprise and policy making
with transparency and public cooperation. In a similar fashion a notion
of ‘informed choice’ is the buzzword of public constituencies entering
into a relational contract with an educational provider or health-care
supplier or otherwise in the catch-all act of being an active citizen.
Active, and thereby responsible, citizenship, much like responsible
innovation, is analogous with public constituencies being cognisant,
engaged and invested in the multiple (expert) discourses – ethical and
scientiic – affecting (the democratic constitution of) the public sphere.
The public’s capacity to promote and safeguard the interests of the pub-
lic sphere is therefore likened to the luidity and permeability of infor-
mation and the capacity of public citizens to translate information into
knowledge and their manipulation of knowledge as social, economic and
political capital. In other words, the public sphere is representative of the
unimpeded generation, distribution, exercise and recycling of knowledge
within a multi-stakeholder network.
The public sphere itself is made more heterogeneous, eclectic, equit-
able and eficacious – where the identity and behaviour of stakeholders
(i.e public constituents or active citizens) are provided with the opportun-
ity and scope through the digital interface to broaden and intensify. The
public sphere in this instance is furthermore extended and elaborated,
 The inescapability of knowing in the digital society 189

where exported online as an innumerable conluence of voices. This con-

luence, which I have referred to as the polylogue is signiicant not only
as a conduit for, or distributor of, knowledge but as a crucible for rumin-
ation, contestation and potential co-production of knowledge.
In the milieu of open science, open policy and open science policy the
ideal of democratic knowledge distribution and co-creation (upstream
engagement) is potentially compromised by a need to know too much,
or, in other words, a danger that too much might be known and that
intensive knowledgeability might culminate in negative outcomes. Such
may be the case where ‘crowd-sourcing’ dilutes the veracity and cred-
ibility of the knowledge under consideration. Wikipedia, as a well-known
version of the crowd-sourcing model, offers a lucid example of how
multiple informational authors can confuse, contradict and ultimately
distort the reality and reliability of any presented knowledge. Readers
of Wikipedia entries ought to access and buy into the knowledge pre-
sented judiciously, cognisant that the authenticity of associated claims is
not always guaranteed. The quality of knowledge that is crowd-sourced
may therefore be questionable. Conversely, crowd sourcing provides an
opportunity where multiple stakeholders can engage in critical discus-
sion of a knowledge claim and engage in a process of extended testing,
where new knowledge is subject to the scrutiny of multiple actors and
not only designated or licensed experts. This kind of critical, deliberative
engagement with knowledge at a mass level is therefore also synonymous
with knowledge production as a process of cooperative interface and col-
laboration with various stakeholders who may be distinguished by their
respective levels of lay or scientiic expertise. How expertise and identity
is delineated and segmented transparently is, however, problematic in
digital domains where the identity of contributors/authors is (intention-
ally) concealed.
A signiicant stumbling block therefore in considering the right to
know or not to know in digital domains is the lack of identity owner-
ship and the intentional obfuscation and/or concealment of identity by
online constituents. Informational contributors in online domains may
frequently and easily disguise their identity so that online disclosures are
not attributable to ofline identities. In this context, who is saying what
and who is listening is entirely speculative. Whilst this kind of behaviour
tends to characterize blogs as online discussion forums, communication
portals such as Twitter are much more revealing of their authors and
provide the reader with suficient clues and/or intelligence when making
estimations about the value and credibility of their pronouncements.
The popularity and signiicance of digital social media such as Twitter
should not be underestimated, not least for the eficiency and speed
190 Richard Watermeyer

with which communities are linked to myriad informational resources.

However, the speed of disclosure on social media may be seen as det-
rimental where the desired release of information by a irst author is
intended to be gradual and/or drip-fed. For example, many high-proile,
ethically complex public consultations, such as that recently administered
by the Human Fertilisation and Embryology Authority into mitochon-
drial transfer, revealed that the authority was especially concerned about
the threat of ‘informational leak’ through online social media. At the
open authority meeting, public attendees were strictly reminded not to
disseminate any of the meeting’s outcomes until after the meeting. I have
witnessed an increasing trend for what we might think of as intentional
Twitter black-out. Anecdotally, this seems linked to degrees or stages of
knowledge ownership or the gradual dissemination of knowledge, where
the knowledge under question has been appropriately veriied.
Issues of informational ownership are made more complex and prob-
lematic where ownership corresponds to inancial investment and where
knowledge is understood as intellectual property with a commercial
basis. In this context, a tension exists in terms of disseminating know-
ledge to the widest possible user group but in terms that do not under-
mine the proitability of said knowledge or the extent to which it might
be commercially exploited. The debate around open-access publishing
rages on. What remains integral to this debate is the central question of
who owns the knowledge. This leads me to make a inal consideration of
knowing and not knowing and the right of this in an increasingly digitally
mediated world.
The right or capacity of the individual as active citizen, consumer and
contributor in a global knowledge society to opt in or out of the process
of knowledge production is effectively removed where contemporary life
as a ‘liquid modernity’ (Bauman 2000) is conducted within a digital or
non-physical knowledge ecosystem; where the connectivity of persons
and the continuity of their myriad networks is absolute. To opt out of
the ‘digital society’ is to not exist, insomuch as Facebook, Twitter and
other forms of social media and online networks signify and corroborate
our claims to existence, where large proportions of our time – dedicated
both to the pursuit of social recreation and work – are spent and mani-
fest as, and arranged through, digital interactions. In work and employ-
ment terms, who we are is our personal and company website proile; our
LinkedIn page; our Twitter postings; our Facebook ‘wall’. Business com-
munications and transactions are ever more routed through cyberspace
in commercial and retail terms. Cyberspace is where we conduct our
(online) banking; where we buy our groceries; arrange our holidays; pro-
cure services. Increasingly, it is also where our children play and grow up.
 The inescapability of knowing in the digital society 191

And the basis of all of this is the incessant production, transfer, exchange,
and recycling of information and ever-changing knowledge.
We are thus faced with the inescapability of the global information net-
work. To exist ofline and/or ‘off the grid’ is for the vast majority fantas-
tical and absurd. Evidence suggests that the average owner of a SMART
phone looks at her/his device, on average, 150 times a day or every 6.5
minutes (Meeker and Liang 2013). The reality of our being ‘plugged-in’
is incontrovertible. SMART mobile devices such as phones, tablets and
laptops are the modern social, cultural and economic compass – quite
literally under the terms of GPS – and our means of orientation through
the maze of the information society.
As tools of orientation, mobile SMART devices are also the means
for our everyday domestic and work-related diagnosis. As super-com-
puters in the palm of a hand, these devices provide instant and perman-
ent access to an endless abundance of information which is constantly
being accessed and retrieved, taken and applied in ofline circumstances,
and quite likely thereafter returned to an online realm. The distinction
between our ofline and online realms is becoming ever more blurred,
where informational luidity and instancy, brought about by the mobility
and ubiquity of SMART technologies, informs our actions, behaviours,
decisions, and our understanding and knowledge of the world (ofline
and online) we inhabit.
The impossibility of policing or regulating the global web is well
reported and renders strategy for delimiting the dissemination and low
of knowledge, even sensitive and/or highly conidential knowledge, as
largely impotent. Indeed, national authorities ind themselves compro-
mised by individuals and agencies who believe a part of their responsible
citizenship is in ‘outing’ these kinds of information. We need only look
at the cases of WikiLeaks founder Julian Assange, and the recent case of
US soldier, Bradley Manning, to consider the ways in which individuals
assert the signiicance of total transparency.
We might then surmise that the right to know or right not to know is
in the age of the digital, information and network society, a redundant
question or one with a self-fulilling answer.

Conclusion
As we increasingly transfer our interactions with information and infor-
mational gatekeepers onto online domains, our experience in receiving,
assimilating, synthesizing and producing new knowledge raises signii-
cant questions in terms of our (public citizens’) capacity as choice-wield-
ing agents. In the irst part of this chapter, I spoke of how an emphasis
192 Richard Watermeyer

in the open governance of science has intensiied the focus on our inter-
communication and interactions with scientiic knowledge as democratic
citizens. The polylogue was discussed as a site and process of democratic
knowledge sharing and creation, yet, as a social and cultural practice, a
site disposed of the same inequities encountered in ofline settings. The
polylogue may be seen simultaneously as a process of mobilization and
displacement of the public’s capacity and right to know.
The ubiquity of information in online domains is not without risk,
where ubiquity equals saturation and where a saturation of information
engenders disenchantment, fatigue or ennui. Indeed, the openness and
free availability of information may actually harm the knowledge process,
where knowledge consumers become distracted, lost, disengaged, lazy
and susceptible to bad science and bad knowledge. Furthermore, even
where online knowledge consumers are deemed to be increasingly more
judicious in their behaviours, what of the ways with which they distribute
and disseminate knowledge?
The most profound but ostensibly most futile question is whether all
information is suitable for open access and dissemination in the digital
age? This question problematizes a right to knowledge as the basis of
democratic citizenship; where such citizenship is perceived and promul-
gated as the epicentre of science in society. It is futile because the very
essence of the Internet is that all knowledge, its producers and receivers,
are connected and inseparably so. More proitable questions might be
not about our right to know or not to know in the digital age, but about
how we make sense of what we know, what we need to know and what
we do not need to know. Discussion of these questions has never been
so necessary.

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13 The food we eat: the right to be informed
and the duty to inform

Michiel Korthals

Introduction: the evolving gap between food production

and consumption as the context of the desire to know
One of the most salient features of human evolution is the continu-
ing reduction of time needed to produce, prepare and digest food
(Wrangham 2009). This evolution reveals simultaneously one of the
main ethical paradoxes of food: humans have become what they are now
due to the continuing reduction of food processing time (time-saving
cooking mechanisms), and this enables them to be severed from food
(production), to forget about food (production), even to degrade food
(production). The evolutionary advantages in the reduction of food col-
lecting, producing and digesting time create also the risk that people
become both alienated from food and subordinated to the corporate pro-
duction of food. In the end, many people no longer know what to buy
and what to eat – but of course they must eat. They know how to unpack
a prepared box or how to put its content in the microwave, but no more.
This gap between consumption and production and the complexity of
food production make the sector a very inaccessible one; each food item
is processed and traded many times before it lands on the shelf and even
producers at the beginning of these processes do not know what happens
later. Alienation is the core word here; it derives from the gap between
food production and food consumption. However, nowadays many con-
sumers feel alienated and lose trust in the food sector (Berg 2011); some
want to go back to the earlier situation of food self-suficiency (Pollan
2006); others want to ind relevant knowledge, discuss new ways of food
preparation and food production, and even become involved in new
types of production (Stolle and Micheletti 2013). Indeed, it is not very
fruitful to overcome this disconnection by returning to the ways of food
production of two hundred years ago: new technologies have developed,
new types of relationships between farmers, processors and consumers
have emerged, and the role of food in our social life has changed (to
name just a few factors).

196
 The food we eat 197

Therefore many political and ethical approaches propose to overcome

this alienation with new connections between consumption and produc-
tion. Food ethics, the discipline that besides other issues also includes
the issues of the right to know and of labelling, had a serious start with
a number of quite pressing social concerns that consumers, policy mak-
ers and others expressed about the present-day food production system.
In the next section, the most urgent of these concerns will be discussed.
These concerns it in with the more general social trend that people want
to be taken seriously, expect answers to the problems they are concerned
about and to take action when necessary. ‘In modern times, science has
always spoken to society …. But society now “speaks back”’ (Nowotny
et al. 2000, p. 50).
In the food sector the right to know gets full prominence, and deserves
therefore full support and even protection. This is contrary to what is
the case in the medical sphere, where the right not to know often needs
more attention. Consumers that do not want to know about the intrica-
cies of their food items can simply refrain from looking at the available
information. The right to know means that consumers can choose one
type of food instead of another, according to their own ideas and values.
Modern consumers can make different choices but an ‘opt out’ (as in
medicine) is only possible at the cost of starvation. Interesting questions
also include who has the duty to inform consumers (as the mirror act to
the right to be informed), and how far does the consumer have a duty to
search for information? About this last issue I can only spare a few words,
because it opens up a whole new subject of what kind of duties, morally
speaking, people have when they make their food choices concerning
modern, Western life and food styles, which have such devastating effects
on poor people and the environment. Food choices and more generally
food styles are seen by many as purely individual expressions of personal
autonomy that cannot be overburdened by a duty to ind out what the
ethical impacts are of these so-called personal choices on the rest of the
world and nature. I will restrict myself here to the subject of the right to
be informed and take into account those that think otherwise.
In this chapter, I will discuss the knowledge people have and want to
have about the food they eat, the information strategies to consumers, the
labelling strategies, and the knowledge policies of stakeholders. First, I will
introduce consumer rights, the right to adequate, nutritious food and the
right to buy food on the basis of informed food choice. Secondly, I will
discuss some ethical considerations that underpin these ideas about con-
sumer rights, but also make it clear why for a modern consumer it is a very
dificult task to get relevant information to exercise those rights. One of the
reasons for this is that food industries use all kinds of scientiic and non-
198 Michiel Korthals

scientiic strategies to seduce consumers into buying their products and

consumers are vulnerable to these clever strategies. The food industry does
not always take its duty to inform consumers seriously. Thirdly, I will dis-
cuss the pros and cons of labelling as a new kind of knowledge and infor-
mation structure conscious consumers ask for. Labelling seems to be an
important strategy to assist consumers in their informed food choice, but
the sheer quantity of incoherent information and the lack of transparency
of the labels are often a hindrance. Trust is therefore not always restored.
Finally, some other ways to obtain knowledge will be discussed.

Consumers’ rights
As early as 1962, the Kennedy government in the USA appealed to
the rights of consumers in a rather broad way in the Bill of Consumers
Rights (Reisch 2004), which was incorporated into the EU consumer
policy programme. These rights were: the right to safety; the right to
be informed; the right to choose; the right to be heard; the right to
representation; and the right to adequate legal protection. The right to
food achieved in 1966 its full meaning in the International Covenant on
Economic, Social and Cultural Rights (Article 11), as the right to avail-
able, accessible and adequate food. Adequate means ‘culturally accept-
able’. After the Rio Convention (1992), in which the overall importance
of sustainable production was agreed upon by most nations, and the
formation of the European single market, the ‘ethical consumer’ and
diverse consumer concerns came to prominence. As is stated in General
Food Law (178/2002/EC), which deines producer (food chain) respon-
sibility, active consumers are to be informed according to their rights.
However, their concerns are multiple and often ambiguous. In ethics,
consumers’ rights can be justiied from at least three different perspec-
tives that frame, in different ways, consumer sovereignty. A deontological
position, that strongly advocates undeniable sovereignty, can be traced
back to the German philosopher Kant. In 1785 he stated:
Laziness and cowardice are the reasons why such a large part of humanity, even
long after nature has liberated it from foreign control (naturaliter maiorennes),
is still happy to remain infantile during its entire life, making it so easy for others
to act as its keeper. It is so easy to be infantile. If I have a book that is wisdom for
me, a therapist or preacher who serves as my conscience, a doctor who prescribes
my diet then I do not need to worry about these myself. I do not need to think,
as long as I am willing to pay.
(Kant 1995)
As consumption choices are included in one’s autonomy, consumers
should determine their own food (diet); as a consequence, the markets
 The food we eat 199

should follow these consumer preferences. In fact, this argument is one

of the strongest arguments against the conceptual distinction between
consumer and citizen, because it makes it clear that in the market, the
autonomy of consumer, not producers, should prevail. As is clear from
Kant’s quotation, he presupposes that an adult is educated, has capa-
bilities, and has (reliable) information on the diets with which he or she
wants to comply. Moreover, this view presupposes also that production
systems and markets deliver the goods and services such an autonomous
person prefers.
However, consumer sovereignty can be justiied from a utilitarian per-
spective also, although in a different way, as is clear from John Stuart
Mill’s statement in 1863 on freedom:
The only freedom which deserves the name, is that of pursuing our own good in
our own way, so long as we do not attempt to deprive others of theirs, or impede
their efforts to obtain it. Each is the proper guardian of his own health, whether
bodily, or mental or spiritual.
(Mill 1975)

Again, from this perspective, the autonomous person should be enabled

to strive for his own good through education, regulation, reliable infor-
mation and responsive markets. However, from a utilitarian perspec-
tive, governments are justiied in balancing the overall costs of letting
consumers choose and of letting experts on healthy food decide what
actually constitutes healthy food and nutrition. There is not an inherent
principle of consumer sovereignty which applies here.
Thirdly, from a pragmatist approach, originated by Peirce, James and
John Dewey, the right to food is not only the right to ill bellies but
more speciically the right to live with food production processes that
relect substantially our various life and food styles (Keulartz et al. 2002;
Korthals 2004). Our various life and food styles, connected with cook-
ing and farming practices, give rise to different preferences and interests
with respect to information: for example, some people want to know
more about animal welfare, others about the impact on health of food
items and others about taste (Coff et al. 2008).

Roles of consumers and their interests in knowledge

The roles of consumers in the food sector can be various, and the same
applies to their interest in types of knowledge. Consumers can exercise
their rights by boycotting products, or buycotting, which means buying
speciic products that correspond with ethical values, by leading a life-
style totally oriented to ethical consumerism and by participating in the
production of their own food (Stolle and Micheletti 2013). In all these
200 Michiel Korthals

situations, consumers need to have information about food products and

their production processes.
However, to get the relevant information corresponding to the respect-
ive role and values, consumers are confronted with all kinds of informa-
tion strategies from the industry and other stakeholders. Companies can
be seen as having a duty to inform according to consumers’ rights (and
not according to their own interests). The budget of communication
and marketing departments of the big food companies are often more
than a third of their total budget and their daily messages to consumers
are innumerable. They are way larger than the budget of non-govern-
mental organizations (NGOs) or governmental agencies. Added to this
continuous conscious and subconscious information offensive is the
labelling information done by NGOs or the government. For instance,
Ecolabel Index listed 432 ecolabels – ranging from ‘salmon-safe’ to ‘bird-
friendly’ – across 246 countries and 25 industries (ecolabel.com). What
has been called choice stress is the result (Mick et al. 2004). Besides
that, the information given by industry is often wrong and frequently
misleading or irrelevant. Health claims are often mendacious; the EU
food agency recently disapproved of more than 80 per cent of them.
The information is often misleading; for example, when the label says
‘less sugar’ the product can still contain more calories than necessary.
The industry researches the connection between consumer mood and
buying behaviour, and constantly (ab)uses via the packaging the often
wrong connection people make between food labelled as healthy and its
calories and nutritional value (Bowen et al. 1992; Wansink and Chandon
2006). ‘For example, we found that people believed that a combination
of three “healthy” foods had 28% fewer calories than three “unhealthy”
meals; although in reality the combination of healthy foods contained
34% more calories’ (Chandon 2012). For many consumers the informa-
tion given is irrelevant because they do not have an interest in calories
or proteins but in information about taste and issues of the production
process, like animal welfare or fair trade (Bouwman et al. 2009).

Information about food, labelling and certiication

Information about food composition and food quality and about the pro-
duction process is impregnated with values and therefore not a purely
objective, neutral message that is scientiically proven. Information is
given via labels, advertisements or other mass media messages, but also
via subconscious messages. Labels refer to standards which express qual-
ities of the product and the production process (Busch 2011). All kinds
of normative choices are made before a standard of food information
 The food we eat 201

is established; facts that look so simple, like the number of calories, are
impregnated with values, in this case because a calorie is something dif-
ferent before or after cooking, in the stomach or outside, and even men-
tioning calories is a normative decision. In most cases these underlying
values that determine the quality of the product are not made explicit,
and here starts one of the main contentious issues in the confrontation
between consumers and producers.
Given the lack of reliable information about food, food codes such as a
trafic-light system of red (for instance, for unhealthy), orange and green
(for healthy choice) can have a positive function for Western ethical con-
sumers who want to know more about the production of food. From an
ethical point of view, the mandatory labelling and certiication are legit-
imate strategies to implement the consumers’ right to know. It is there-
fore strange that in some countries labelling of, for example, genetically
modiied food is still forbidden. In California, for instance, the manda-
tory labelling of genetically modiied food has not been accepted after
a big protest campaign by large agrifood companies like Monsanto and
Pepsico (California Proposition 37, 2012). If seen as reliable, labelled
food can provide a sense of connectedness between consumers, their
food, and the people and place from which it came. As Luetchford notes,
‘in ethical consumption the aim is to break down and demystify the
distance between parties in the exchange and accentuate the relation
between them’ (Luetchford and Carrier 2012, p. 20).
There are several types of labelling schemes. Some labelling schemes
are the product of the marketing department of a food company, and
are often seen as no more than that: marketing tools; or they may be vol-
untary, market-based regulation schemes for public-demanded or state-
mandated labour and environmental standards. These schemes are seen
by many as the least reliable. Often labelling schemes are introduced,
monitored and maintained by certiication agents (or third-party certi-
iers); they are independent of the companies involved, but not with-
out an interest (see below). Finally, NGOs develop labelling schemes,
for example with respect to animal welfare or fair trade (such as Max
Havelaar, for inter alia fair-trade coffee, rice and cotton). All of these
schemes have their advantages and disadvantages. In an open society
with impartial mass media, good journalists and critical NGOs they can
be discussed; many NGOs criticise, for example, the different types of
scheme as types of ‘greenwashing’ and ‘fairwashing’ (see also Bartley
2011). For example, they criticise these schemes for seeming to be posi-
tive alternatives to the regulations of developing countries, when in real-
ity they encourage bad government or they allow governments to cede
their sovereignty in the case of the food sector to the demands of Western
202 Michiel Korthals

labelling organizations. Food codes are sometimes more in the interests

of those organizations than in those of the developing country workers
or ecology. Moreover, new technologies to authenticate food are being
developed, like laser-based isotope detection systems to identify the ori-
gin of food items, and critics can make use of these technologies. The
effects of labelling schemes for producers and the production process,
however, can also be that more profound reworking of the institutions
of the food sector in the sense of more justice and better governmental
oversight are not taking place (Busch 2011). For a more radical food
information system, see below.

Certiication by a third party

A typical strategy to build credibility with respect to a particular food
chain is to organize certiication by independent bodies based on codes
and standards. This strategy is encouraged by policy makers and NGOs
and is usually done by establishing quality criteria and through paper-
work and random veriication. Sometimes the veriication is quite mea-
gre; moreover, the quality standards are the result of selecting certain
values (such as saving the rainforest) and neglecting others (such as indi-
genous people living in the forest).
Well-known labels such as Max Havelaar are dificult to understand
because they apply certain criteria that for the business involved are
transparent and relevant, but for the consumer quite contradictory and
full of exceptions for many producers. Often labels issued by the certi-
ication authority originate from requirements that meet the needs of
the clients and not the preferences, wishes and ideas of consumers and
farmers: ‘In most instances, certiication is voluntary and administered
by private bodies that depend on the support of irms and must com-
pete with other certiiers for credibility and recognition’ (Bartley 2011,
p. 442). Moreover, and not usually known to consumers, producers can
often only participate if they make a inancial contribution. Nevertheless,
such labels gain the trust of certain consumer groups because according
to them there is nothing better. A premise of many certiications is that
consumers do not understand the science behind the standards, and just
want to buy something that gives them an ‘ethical good feeling’. So, cer-
tiications often prey on ethical feelings of doing something good.

Increasing and decreasing trust

Trusting or not trusting information on food starts with the concrete rela-
tions people have with, for instance, bread, milk, potatoes and cabbage
 The food we eat 203

and with themselves and their co-eaters. These concrete relations con-
cerning the daily choices of food incorporate various values, like the ones
connected with family and friendship, with nature, and with global and
fair justice. The right to know is therefore never only an issue of having
access to knowledge but is also about the knowledge interests people
have and their trust in the knowledge producer.
In Europe consumers are experiencing nearly every month a food
scandal, and in the surveys one can see how trust in food companies
slowly declines (Eurobarometer 2006, 2012). Whether it is about an
illegal mix of beef and pork (or horse meat) sold as beef, a fair-trade
sugar labelled as coming from Brazil but in fact coming from India, a
health claim that is just fraudulent, people feel that companies are often
not honest and become cynical about labels and information. The meat
adulteration scandal of 2013 in Europe (Wikipedia has an informative
entry about this) is one of the many events that decrease consumers’
trust with a drop in sales of frozen food as a result. In Europe, according
to the Eurobarometer 2006 and 2012, the distrust of consumers in infor-
mation given by companies is high.
The problem is, however, that according to most social scientists, trust
is absolutely necessary for a society to survive. Well-known economists,
psychologists, sociologists and scholars of religion have analysed trust and
written in-depth studies about it. For example, Niklas Luhmann argues
that ‘a complete absence of trust would prevent (one) even (from) getting
up in the morning’ (Luhman 1982, p. 20). John Elster (1987) describes
trust as the lubricating oil of the social machine. Robert Putnam (2000)
says that a high level of conidence maintains a cooperative society, with
eficient public and private institutions. Francis Fukuyama (1996) even
tries to show that societies with more economic conidence score bet-
ter. Trust is a relationship not based on power. Also it is not a contract
between two more or less equal parties who agree to do something for
each other and fulil this agreement. It is an unequal relationship, with-
out an exchange of equivalent activities. Trust is a special relationship, in
which three parties are involved: the person who gives trust, the one who
is trusted and the ones who are not trusted. A credible person behaves in
such a way that he or she can be trusted, compared to others who cannot
be trusted. Merely saying ‘trust me’ is insuficient.
Annette Baier has presented some topics (she calls them principles)
that steer trust in this sense. As stressed, it is a balance between con-
siderations of what a citizen consumer wants to eat and to provide to
family and friends, and her other, super local considerations. A perceived
appropriate balance can build trust. In terms of Baier, the principles of
trust are:
204 Michiel Korthals

The irst principle (Principle M) forbids manipulation of others by deliberately

raising false expectations in them about how one will respond to something one
wants them to do. The second (Principle D), requires one to take due care not
to lead others to form reasonable but false expectations about what one will
do, where they would face signiicant loss if they relied on such false expecta-
tions. The third (Principle L) requires one to take steps to prevent any loss that
others would face through reliance on expectations about one’s future behavior,
expectations that one has either intentionally or negligently (that is by infringing
Principles M or D) led them to form.
(Baier 1994, pp. 133–4)
On the basis of these insights, one can conclude that the examples of giv-
ing wrong, misleading or false information are indeed breaches of trust,
in particular conlict with Baier’s principles M and D. Moreover, the
often different, opposite and partially overlapping information claims and
labels weaken the credibility of the position of the claiming or labelling
agency and as a consequence also of the sector as a whole. The example
discussed in the following section illustrates this point.
A violation of a code of ethics or code of conduct of a company, even a
partial one, be it by individuals, departments or the company as a whole,
is extremely damaging to the credibility of the company, but also of the
whole sector. Trust is therefore not blind acceptance: ‘Well placed trust
goes out of active inquiry rather than blind acceptance’ (O’Neill, 2002,
p. 76). The active inquiry covers also the circumstance that trust given
to a labelling scheme or a company implies that trust is not placed in
another body; the consumer will always have to make a choice, no one
can take that away from him or her.

Problems of information: the example of health advice

Advisory information about a food item suggesting a healthy diet faces
three problems when it comes to trust and credibility. First, the majority
of European consumers are interested in aspects of nutrition other than
health, such as taste and social experience. Food scientists and produ-
cers overestimate the importance that consumers attach to the health
information given to them. Then there is the complexity of the bodily
impacts of food products. These are so complex that a negative and pos-
itive effect of a particular food for health or the environment can be
identiied. Usually this problem is solved by simply saying nothing about
the other, adverse, effects, or to design research in such a way that the
desired outcome can be proclaimed. Science can always demonstrate a
positive effect of a certain food ingredient. However, credibility is under-
mined by ‘pimped’ claims. Finally, recommendations for a healthy diet
can have a negative impact on the environment in which health and
 The food we eat 205

sustainability are not always in harmony with each other. Here, very lit-
tle research has been done and so there is not much knowledge about
these cross connections, except in the case of ish. The advice that many
(non-) governmental agencies give is to eat more ish. However, if people
actually complied with this recommendation at least twice as many ish
would need to be caught, and at the current rate of consumption the seas
are already quickly losing their ish stocks (Jenkins et al. 2009). The com-
plexity of food production and the concentration of economic power in
the hands of a small number of companies make contemporary arrange-
ments that focus exclusively on nutrition or sustainability not only risky,
but also lacking in credibility. Conlicting information about whether or
not a food item is healthy or sustainable reduces conidence in products
and institutions.

Co-production as an alternative strategy to regain

conidence
An alternative strategy to labelling focuses on the restructuring of the
entire area in which decisions are taken about nutrition, sustainability
and health, so that the mutual inluences can be identiied more easily.
When the effects of food production on health and the environment are
identiied, because the barriers between these different areas are demol-
ished, assessments about production processes can be made earlier and
better. The government has an important role here, if only in the restruc-
turing of ministries so they can make connections between these aspects.
Besides that, food consumers should be allowed by governments and
business to check the origin and quality of foods themselves as much as
possible. Modern mass media and technologies allow this kind of infor-
mation to be available.
Moreover, the role of consumers in contributing to local produc-
tion through, for example, urban gardening or Community Supported
Agriculture, should not be underestimated because this allows them to
become acquainted with the intricacies of the balance between inter alia
local and super local biodiversity and health. It is the active participa-
tion of consumers that enables them to have their own views on food
risks and on the necessity of balancing the numerous values connected
with food, such as health, animal welfare and sustainability (Allen 2012).
Moreover, participation enables people to place trust in professionals
that can be directly checked in cases of doubt. The Internet and other
social media make it easier now to connect consumer organizations and
NGOs, as well as the producers themselves; it allows the building of a
collective memory of what is seen as good food.
206 Michiel Korthals

Conclusion
In the medical sphere, there is a continuing discourse on the status of
the right to know and the right not to know, due to the special charac-
ter of medical knowledge. In the food sector the discourse about these
rights is different, due to the fact that a choice for a particular food
item and the connected knowledge can be refused or neglected with-
out personal disadvantages. Here the right to know and to be informed
about the aspects of food one is interested in has much more prominence.
Moreover, the right to know is never just a case of having access to
knowledge but is also about the relevant knowledge, depending on
the interests people have, and their trust in the knowledge producer.
Various ethical approaches support this right to know; however, to
really understand this right in its contextual meaning, it is neces-
sary to consider the practices in which consumers and producers are
involved.
The right to know has its mirror in the duty to inform, and here com-
panies, governments and civil societies play a role. However, the food
sector, the one which has here the foremost duty, is an incredibly com-
plex bowl of spaghetti, full of black holes, sometimes due to the strate-
gies of producers to make information inaccessible and to defend their
interests (Roberts 2008). It is a ‘bizarre bazaar’ (Busch 2011). Perhaps
the gap between consumers and the production of food can be bridged
by labelling and certiication schemes, but these are in many cases not
suficient to structure the food sector into a fair and integrated busi-
ness that responds to consumers’ and citizens’ interests. Market-driven
and third-party certiiers (labelling organizations) are often not living up
to their promises. The right to be informed can also be given shape by
consumers and their organizations in developing knowledge and infor-
mation schemes (as a kind of crowd communication system) by using
modern mass media such as apps. Moreover, in participating in agri-
cultural processes, for example in Community Supported Agriculture,
consumers can organize their own knowledge about what they think is
ethically legitimate to eat.

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Websites
Compassion in World Farming www.ciwf.org.uk/
Environmental Working Group www.ewg.org
European Society for Agricultural and Food Ethics www.eursafe.org
The Fair Food Network www.fairfoodnetwork.org/
Food and Agriculture Organization of the United Nations http://fao.org
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www.fastcoexist.com/1678651/people-are-starving-but-theres-enough-food
 Index

access to information, 104, 145 capacity, as, 31

digital infrastructures, 113 consent, and, 32
genetic testing, 111 decisions, and, 29
accountability, 5, 80 designer babies, and, 151
ethics, 117–18 factors for maximum, 28
external, 117 food consumption, 199
function, 117 free choice, 32
internal, 117 good, own, 30
media, 170 individual, 112
patterns, 116 interpretations, 21
procedural, 118 judge, own, 29
professional, 121 mixed blessing, as, 33–6
public, 143 preferences, and, 28, 31
relationships of, 123 privacy, relationship with, 42
science, 118–21, 126 respecting right to, 32
scientists, of, 117 self-determination, and, 31, 32
truth, 121–2 solidarity, 91
actionability, 63, 64, 65 success, 38–42
active citizenship, 78, 188, 191 theory, and, 28, 31
agency, 87 thick conception, 30–3, 39
altruism, 58 thin conception, 28–30
ancestry unsolicited disclosure, and, 27
biogeographic, 75, 76, 78 warnings, 35
commercialized tests, 116
evidence, 121 beneit sharing, 146
genetic, 93 beyond-the-clinic (BTC) genomics, 100
geographical, 123 biobanks, 2, 17–18, 91, 98, 109
identity, 122 access, 143
information, 75, 76, 121 causes of problems, 57
studies, 117, 121 early debates, 56
tracing, 19 establishment, 61
anonymization, 18 ethics, and, 17
applied human genetics, 34, 37 feedback, 56–65
audit culture, 118 global networks, 56
authorities increased recognition, 15
jurisdictional, 77 large-scale population, 3, 58
legal, 80 mechanisms, lack of, 59
right to not know, and, 113 motivation, 16, 58
state, 110 newer, 61
autonomy, 104 population, 56
achievement, as, 31 research priorities, 65
assumptions, 40 scale, 56

209
210 Index

biobanks (cont.) online, 191

set up, 57 parental, 155, 159
trust, and, 60 removing, 90–1
bioethics research, 64
awareness, 137 responsibility, and, 88–9
consequences, 135 self-expression, as, 89
contemporary, 40 testing, see genetic testing
global, 6, 136, 146, 147 clinical trials, 62
neoliberalism, 147 ethics, 140
role, 145–7 cloning, 7, 165, 168, 169, 173,
biomedical, 7 174
biomedicalization, 172 coding, genome, 18
developments, 165 non-, 71, 74
ethics, 62 commercial testing, 1, 13, 107
research, 58, 65, 71 protection, 108
technology, see biotechnology utility, 107
biometric identiication, 16, 79 commercialization, 56
biopolitics, 6, 137 communication, 113
life economies, and, 138 channels, 166
neoliberal, 136–9 effective, 48
public domain, in, 139–41 failed, 124
biotechnology, 7, 138, 165, 168 familial, 65
appearance, 165 information technologies,
attitudes, 172–5 180
distinction, 165 model, 167
green, 168, 170 public relations, and, 169
media coverage, 167–72 security, 143
medical applications, 176 communitarian values, 91
news coverage of, 166 consent
optimism, 175 assent, 33
public debates, 165 autonomy, 26, 39
public opinion, 166 data sharing, 108
red, 169, 170, 173, 176 individual informed, 22
breach of conidence, 44–5 informed, 17, 25, 30, 58, 91
medical context, 26, 29, 32
certiication of food companies, moral arguments, 17
200–2 neoliberalism, and, 137
independence, 202 obtaining, 25, 90
insuficiency, 206 open, 22
third party, by, 202 own judgment, 30
voluntary, 202 principle, 26
choice, 4, 96 problems, 124
act of, 89 procedures, 65, 143
assumptions, 85 voluntary, 33
bombarding, 85, 94 consumers
consumption, 198 alienation, 196
decision, as, 92 behaviours, 200
deprivation, 4 boycotting, 200
dialogue, and, 186 duty to inform, 197, 198
equality, and, 86 ethical, 198
everyday lifestyle, 85 Europe, 203, 204
food, 197 food information, see labelling
free, 32 rights, 8, 197, 198–9
higher education, 87 roles, 199–200, 205
increasing, 86 scientiic knowledge, 187
informed, 40, 188 sovereignty, 198, 199
 Index 211

counselling non, 25
directiveness, 37 passive, 65
free, 66 privacy, and, 16
genetic, 33, 36, 63 unsolicited, 3, 26–8, 29, 33
ideology, 88 discretion, 38, 48, 50
need, 56 DIY genetics, 100
criminal inquiries, 70, 79 DNA proiling, 71
prosecutions, 76 consequences, 73
databasing, 74
data collection, 58 intrusion, as, 77
data protection, 13, 45–6 knowledge, 77
developments, 3 politics, 73
ethics, 140 retention of samples, 72
EU rules, 13 system, 72
guidelines, 107 duty
Internet users, 79 beneicence, of, 62
interpretation, 45 care, of, 47
key features, 45 conidentiality, of, 24, 25, 33,
privacy, and, 15 104
regulations, 22, 108 inform, to, 197, 198, 200, 206
data sharing, 140–1, 146 search for information, to, 197
guidelines, 108
move towards, 141 empowerment, 6, 85
personal relationships, and, 142 engagement, 57
race, and, 145 deliberative, 189
designer babies, 6 eficient, 76
concerns, 151 online, 107
criticisms, 162 public, 16, 186
doubts, 163 stakeholders, 61
love, feelings of, 162 understanding, 180
moral, 152 upstream, 180–3
dialogue enhancement, 91–6
bad science, 185 autonomy, of, 27, 33, 35
deicit model, 186 consequences, 155
inconsistencies, 182 environmental, 162
investment, 183 evaluation, 152
mechanism, as, 182 identity, and, 160
online, 7, 185 legality, 161
polylogue, 180, 183–7, 192 love, and, 159, 161
processes, 183 objections, 160
public, 8 parental selection, 7, 155, 159, 163
science, 7 technologies, 138
uninvited, 8, 187 therapy, and, 154
virtual, 184 equity, 3
direct-to-consumer (DTC) tests, 56, 57, trend, as, 21
64, 66, 92, 116 ethical approaches, 21–2
model, 100, 103 ethics review bodies, 118
disaster victim identiication, 79 EU Directive on Data Protection, 13
discipline, 6, 117, 137 European Convention on Human
disclosure Rights, 39
arguments for, 61–3 Euroscreen 1, 2
dilemma, 41, 50 expertise
duty to, 25, 27, 36, 59 interactional, 183
human rights, 49 lay, 181, 184, 189
individual indings, 58 professional, 37
information, 41 scientiic, 181, 189
212 Index

family third parties, harm to, 161–3

consent, 91 genetic determinism, 14–15, 60
history, 66, 91, 103 critical discussions, 15
information, 36, 37 form, 15
interest of members, 24, 33, 36 re-emergence, 15
issues, 24–5 genetic engineering, 152, 153
not sharing results, 108 genetic screening, 1, 24, 85, 165
values, 203 genetic technology, 77
feedback cost, 161
arguments against, 59–61 medical and non-medical, 154
challenges, 57 parents, 151, 152
criteria, 63 genetic testing, 56, 57, 91–6
importance, 56–9 access, 91, 103
information, type of, 59 attitudes, 171, 173
practical issues, 60 autonomy, 20
regulating biobanks, proposals available tests, 91
for, 63–5 booming, 116
right to, 17 children, of, 1, 2, 92, 94–6
food consumption, 8, 196–8 codes, 33
consumers, see consumers commercial providers, 106
ethical, 201 commercial, see commercial testing
food production, 8, 196–8 companies, 93
adequacy, 198 costs, 106
advisory information, 204 declining, 33
complexity, 205 health concerns, and, 106
co-production, 205 implications, 66
effect, 205 increasing, 94
evolution, 196 justiications, 26
present-day, 197 licences, 93
right to live, and, 199 non-disease, 92
forensic genetics online, 101, 106, 108
application, 71–8 policies, 109
boundaries, 70 reliability, 94
contexts, 70 risk, 107
data, 80 solidarity approach, 91
history, 71 unintended consequences, 108
innovations, 76 wealthy country, 103
investigation, 81 genetic traits, 92, 95, 122
knowledge, 81 genetic warnings, 35
racialisation, 75 genetically modiied food, 7, 168,
retention of samples, 80 174, 201
future generations geneticization, 6, 133, 137
beneits for, 58, 60, 62 concept of, 145
diseases, 34 deinition, 133
protecting, 146 philosophical discussion, 146
social behaviours, 187 possible obstacles, 134–5
privacy, of, 144
genetic data, 5, 58 genome
biological relatives, 109 analysis, 108, 111, 122
commodiication, 135 clinical, 105
genetic, 105 health, and, 134
interpretations, 75 know your own, 100–4
public, 109, 111 knowing, meaning, 101–4
use, 169 mutations, 133
genetic design non-human information, 101
manufacured, as, 159 what is, 100
 Index 213

genome sequencing genetic origin, 133

birth, at, 20
determinism, 15 identity, 19, 22, 45, 81
improvements, 4, 56, 66 ancestry, 117, 121
whole, 2, 21, 134, 144 children, 160
genotyping, 70 collective, 3, 19
context, 70 cultural, 126
methods, 71, 74 ethnic, 75
modiied, 81 expertise, 189
globalization, 6 gender, 156
bioethics, and, 135–6 genetic selection, and, 155
education, 188 ownership, lack of, 189
impact, 135 personal, 144
recognised, 79
habitualization, 90 recorded, 79
harm, 122 self-recognition, and, 79
avoiding, 60, 62 incentives, 6, 108, 138
children, 152, 154 incidentalome, 4, 55, 56, 59, 66
clinical validity, 63 individualization, 137, 138
concept, 155 information
damages, 43 digital, 183
degree, 43 exchange, 184, 187
determining, 144 global network, 191
dialogue, 185 own genetic, 57, 105
dignitary, 125 ownership, 3, 190
direct, 65 problems, 204
genetic design, 161–3 trusting, 202–4
legal, 43, 48 ubiquity, 192
likelihood, 47 insurance, 1, 56, 175
health data storage, 109
care, 145, 147, 173 genetic testing, 111
choice, 90 loss, 17
claims, 200, 203 intergenerational justice, 146
ethics, 62 IVF treatment
food advice, 204 costs, 89
future problems, 24 reality, and, 88
importance, 139
model, 58 knowledge
personal, 19–20 availability, 81
perspective, 56 context, 70
related information, 16, 59 creation of, 60
research, 176 disseminating, 71, 190, 191
senstivity, 46 experiential, 183
status, 43 forms, 71–8
tailoring interventions, 145 generalizing, 62
health professionals, 100 negative consequences, 107
disclosure, 49, 59 private sphere, 49
informing others, 37 public sphere, 188
persuasion, 36 quality, 189
relationship, 45
human anthropology, 116 labelling, 142, 200–2
Human Fertilisation and Embryology alternative, 205
Authority, 153 ethics, 201
Human Genome Project, 2, 14, 125, food codes, 202
140, 168 information, 200
human rights, 42, 48–9 insuficiency, 206
214 Index

labelling (cont.) child’s responsibility, 157

policy, 197 concept, 152
strategies, 197, 201 expectations, 157
trust, and, 204 expressing, 159
well-known, 202 genetic design, and, 153
ideal, 161
mass media, 7, 178, 205 knowledge of selection, 158
accuracy, 172 morals, 155
biotechnology, 167–72 selection, 160
cultural contexts, 169 social ideal, 162
digital, 7 parental testing, 94–6
discussion, 201 partnership
entertainment media, 166 information lows, 48
food, 200 medical, 48
framing, 170 public–private model, 57
infrastructure, 167 patenting, 139–40, 146
modern, 8, 206 paternalism, 3, 25–8, 32, 36,
objective reporting, 165 37, 47
outlook, 175–6 autonomy, and, 26
public opinion, and, 170 choice, 88
sensitive matters, 169 consent, and, 26
technologies, 165, 166 feedback, and, 62
medical innovation, 61 pharmacogenomics, 2, 19, 20
medicalization, 137 policing
medication, 2, 19 digital, 191
price, 139 DNA, and, 72
medicine investigations, 76
personalized, 20, 145 practices, 75
predictive, 1, 20 suspicions, 80
minority social groups, 77 politics, 180–3
moral community, 146, 147 population genetics, 91, 116, 117
moralism, 3, 36–7 population-wide genomics
research, 13
negligence, 46–8 privacy, 104
remedies, 47 authorities, 80
neoliberalism, 6, 136 autonomy, relationship with, 42
normative perspectives, 134 concept, a, 16
Nufield Council on Bioethics, 25, 34, cultural change, 13
36 different interests, 14
information to relatives, 36 institutional encroachments, 13
psychological problems, 27 legal protection, 42–9
nutrigenomics, 2, 20 legal remedies, 43
nutrition, 2, 19, 20, 199 meaning, 13
consumers, 204 personal v. family, 24
perspectives, 144
offenders, 77, 79 protecting, 142–5
open access, 141, 146, 192 public domain, 143
organ donation, 91 rethinking concept, 3
separateness, as, 41
parental love trade-off argument, 13, 16
adequate, 154, 160 psychological separateness, 3, 50
attachment, 157 public awareness, 1
authority, 152 capacity, 188
characteristics, 151 increasing, 182
child’s interest, 156 trust, and, 60
child’s interest in unconditional, 155–61 public health perspective, 62
 Index 215

public opinion own genetic data, 5, 104, 105

attitudes towards genetics positive right, as, 39, 111
biotechnology, 172–5 problems, 133
Britain, 174 questions, 81
consultation, 7, 153 retracting, 187–91
controversy, 173 routine, 95
Europe, 174 right to be forgotten, 71, 111–3
health focus, 172 information, 78–80
inluences, 171 meaning, 79
regulation, 175 questions, 81
religious views, 171 rights, 2
United States, 173 interests theory, 155
values, and, 42
reciprocity, 21, 61, 62, 91, 158 waivers, 108
research
abuses, 91 science
biobanks, see biobanks accountability, 117–18
choice, 87 changing culture, 140
consumers, 200 citizenship, 184
denials, 119–21 content, 118
duties, 90 creationism, and, 120
genomics, 116, 117, 122 credibility, 185
group members, 117 critique, 182
health, 205 democratisation of, 16
human population, 122–4 ethics, and, 5, 126
inconvenient truths, 119, 126 methods, 119
indigenous people, 124–126 new epistemologies, 181
large-scale population, 15 new ethos, 141, 142
news coverage, 165 online, 167
pediatric, 65 open, 141, 146, 189
population-level, 117 public distrust, 14
proposals, 118 public policy, 180–3
qualitative, 65 public understanding, 180,
responsibility 186
choice, and, 88–9 religion, and, 171
individual, 6, 95, 135, 145 self-recognition, 78
know, to, 96 self-regulation, 6, 138
social, 136, 147 social hierarchy, 135
right (not) to know social media, 2, 167, 184
approach, 3, 25 forms, 190
arguments, 112 information exchange, 144
authorities, 77 personal information, and, 16
choice, as, 85 popularity, 13, 189
concept of privacy, and, 16 solidarity, 3, 18, 62, 104, 136
concepts, 104 global, 147
context, 103 prominance, 21
contextual changes, 14–17 stem-cell research, 168, 173
emerging issues, 17–21 surveillance, 2, 6, 13, 14, 138
food sector, 206 privacy, and, 143
framing, as, 13, 38
future of debate, 22 technology
genome sequencing, and, 14 advances, 116, 187
institutions, 5 biomolecular, 133
knowledge, 180, 203 knowledge, and, 135, 188
legal effect, 38 new, 89
medical sector, 206 social dimension, 184
216 Index

therapeutic trust
interventions, 136 considerations, 203
misconception, 60, 62 importance of, 203
privilege, 26, 47, 121 increasing and decreasing, 202–4
third parties, 5
access to data, 18 Universal Declaration on Bioethics and
legitimate right, 104 Human Rights, 136
privacy, and, 24, 145 Universal Declaration on the Human
reactions, 34 Genome and Human Rights, 39, 139
rights, 2
warnings, 34 virtue ethics, 154