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Biopolitics: Medicine, Technoscience,
a n d H e a lt h i n t h e 2 1 s t C e n t u r y
General Editors: Monica J. Casper and Lisa Jean Moore
Missing Bodies: The Politics of Plucked: A History of Hair Removal
Visibility Rebecca M. Herzig
Monica J. Casper and Lisa Jean Moore Contesting Intersex: The Dubious
Against Health: How Health Became Diagnosis
the New Morality Georgiann Davis
Edited by Jonathan M. Metzl and Men at Risk: Masculinity,
Anna Kirkland Heterosexuality, and HIV Prevention
Is Breast Best? Taking on the Shari L. Dworkin
Breastfeeding Experts and the New To Fix or To Heal: Patient Care, Public
High Stakes of Motherhood Health, and the Limits of Biomedicine
Joan B. Wolf Edited by Joseph E. Davis and Ana
Biopolitics: An Advanced Introduction Marta González
Thomas Lemke Mattering: Feminism, Science, and
The Material Gene: Gender, Race, and Materialism
Heredity after the Human Genome Edited by Victoria Pitts-Taylor
Project Are Racists Crazy? How Prejudice,
Kelly E. Happe Racism, and Antisemitism Became
Cloning Wild Life: Zoos, Captivity, and Markers of Insanity
the Future of Endangered Animals Sander L. Gilman and James M.
Carrie Friese Thomas
Eating Drugs: Psychopharmaceutical Contraceptive Risk: The FDA,
Pluralism in India Depo-Provera, and the Politics of
Stefan Ecks Experimental Medicine
Phantom Limb: Amputation, William Green
Embodiment, and Prosthetic Personalized Medicine: Empowered
Technology Patients in the 21st Century?
Cassandra S. Crawford Barbara Prainsack
Heart-Sick: The Politics of Risk,
Inequality, and Heart Disease
Janet K. Shim
Personalized Medicine
Empowered Patients in the 21st Century?

Barbara Prainsack

NEW YORK UNIVERSIT Y PRESS

New York
NEW YORK UN IVERSIT Y PRESS
New York
www.nyupress.org
© 2017 by New York University
All rights reserved
References to Internet websites (URLs) were accurate at the time of writing. Neither the
author nor New York University Press is responsible for URLs that may have expired or
changed since the manuscript was prepared.
Library of Congress Cataloging-in-Publication Data
Names: Prainsack, Barbara, author.
Title: Personalized medicine : empowered patients in the 21st century? / Barbara Prainsack.
Description: New York : New York University Press, [2018] | Includes bibliographical
references and index.
Identifiers: LCCN 2017008018| ISBN 9781479814879 (cl : alk. paper) |
ISBN 9781479814589 (pb : alk. paper)
Subjects: LCSH: Personalized medicine—21st century. | Pharmacogenetics.
Classification: LCC RM301.3.G45 P348 2018 | DDC 615.7—dc23
LC record available at https://lccn.loc.gov/2017008018
New York University Press books are printed on acid-free paper, and their binding materials
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Contents

Preface and Acknowledgments vii

List of Figures, Boxes, and Tables xi

Technical Terms and Acronyms xiii

1. Setting the Stage for Personalized Medicine 1

2. The Patient Researcher 15

3. Always On: The Transmitting Patient 46

4. Beyond Empowerment 75

5. Just Profit? 107

6. Beyond Individualism 135

7. The Social Life of Evidence in Personalized Medicine 155

8. Conclusion: Patient Work in the Context of Personalization 187

Notes 209

References 217

Index 259

About the Author 271

v
Preface and Acknowledgments

For many years my work has focused on the governance of DNA tech-
nologies. From this perspective I saw personalized medicine mostly as a
new buzzword, a way of labeling old practices in a different way to open
new doors for funding. It was during the European Science Founda-
tion’s Forward Look on Personalised Medicine for the European Citizen
(European Science Foundation 2012), a two-year long scoping and con-
sultation exercise that I had the privilege of helping to lead, that I was
convinced of the deeper significance of the idea of personalization. Many
practitioners, scientists, and policy makers that I spoke to in those years
and the years that followed, from Europe, North America, the Middle
East, and other parts of the world, saw personalization as a way to use
technological advances to make medicine more “precise.” But many of
the same people also saw it as an attempt to address the challenges posed
by rising health care costs and aging societies. They regarded it as a cost-
saving strategy with patients in the driving seat. The role envisioned for
patients went far beyond having to manage individual risks: One of the
key tenets of personalized medicine is its data-driven nature, including
wider ranges of data than clinical or medical ones. Many of personalized
medicine’s proponents are very open about the fact that patients need to
play a key role also in collecting and “sharing” these data.
At the same time that the work required from patients expands, pa-
tients’ influence over what data and information will be used, how they
will be used, and for whose benefit, is waning. The “tapestries of health
data” that are envisaged to underpin medical practice and research are
prescriptive in what they can include and what they cannot. Narra-
tive, unstructured information and personal meaning have little room
in them, and data and information from marginalized populations are
often not included at all. This all stands in a clear tension with the pro-
nounced rhetoric of patient empowerment and patient participation.
The mission of this book is to address this seeming paradox. Why is it

vii
viii | Preface and Acknowledgments

that the work required from patients is becoming more expansive and
less self-directed at the same time that the flag of patient empowerment
and participation is raised over ever wider territories in medicine and
health care?
A lot of people and institutions have supported this book project. I am
deeply grateful to the Rockefeller Foundation for inviting me to spend
a month at its Bellagio Center in the summer of 2016. I had planned to
use that month to try to forget about personalized medicine and start a
new project. I ended up doing the opposite: I forgot about my new proj-
ect and started rewriting the book. The final manuscript has benefited
greatly from numerous conversations with my fellow residents, includ-
ing Isher and Montek Ahluwalia, David Autor, Kate Bredeson, Edith
Brown Weiss, Medora Dutton Ebersole, Alec Freund, Matthew Goul-
ish, Ann Hamilton, Ben Hecht, Lin Hinxson, Lynn Leibovitz, Michael
Mercil, Pam and Jim Murray, Eric Nordstrom, Auma Obama, Catherine
O’Regan, Tania and Antonio Patriota, Sanchita and Somitra Saxena, Ste-
phen Rapp, Donatha Tibuhwa, Charles Weiss, and Karl Zimmerer. I am
particularly grateful also to the Center’s managing director, Pilar Palacia,
and everybody else at the Foundation and the Bellagio Center who has
made my time there so special.
Among the colleagues and friends who have helped the arguments
in this book take shape are Daphna Birenbaum-Carmeli, Hagai Boas,
Marianne Boenink, Alena Buyx, Carlo Caduff, Giulia Cavaliere, Luca
Chiapperino, S. D. Noam Cook, Alan Cribb, Peter Dabrock, Lorenzo
Del Savio, Edward (Ted) Dove, Sarah Franklin, David Gurwitz, Erica
Haimes, Yael Hashiloni-Dolev, Johannes Fellinger, Robert Flanagan,
Cesar Enrique, Sahra Gibbon, Torsten Heinemann, Stephen Hilgart-
ner, Giraldo Herrera, Ine van Hoyweghen, Marie-Andrée Jacob, Hanna
Kienzler, Puneet Kishor, Lene Koch, Lea R. Lahnstein, Thomas Lemke,
Sabina Leonelli, Nadine Levine, Jean Lo, Ilana Löwy, Federica Lucivero,
Jeantine E. Lunshof, Claire Marris, Ingrid Metzler, Bronwyn Parry,
Maartje Niezen, Mette Nordahl Svendsen, Katharina T. Paul, Manuela
Perrotta, Annette Rid, Christoph Rehmann-Sutter, Michael Reinsbor-
ough, David Reubi, Nikolas Rose, Amnon Shavo, Robert Smith, Robert
K. Smoldt, Tim Spector, Niccolo Tempini, Natali Valdez, Hendrik Vogt,
Nicolaas Wagenaar, Ina Wagner and all members of the Data and IT
in Health and Medicine Laboratory at King’s College London. I wish I
 Preface and Acknowledgments | ix

could blame them for any errors or omissions, but I am afraid they are
solely mine. I thank Sally Eales, Clemence Pinel, and Thomas Palfin-
ger for their research support, and Ilene Kalish and Caelyn Cobb for
having made working with NYU Press such a pleasurable experience.
To Monica Casper and Lisa Jean Moore, the founders and editors of
the NYU Press Biopolitics series, I am grateful not only for their im-
mensely helpful feedback, but also for their enthusiasm for this project
and their moral support. Another big thank you goes to the reviewers
for NYU Press whose suggestions and constructive criticism have been
invaluable.
Adele Clarke, Carrie Friese, Gabriel Krestin, Gisli Palsson, and Tamar
Sharon have not only read and commented on several chapters but have
also believed in this project at times when I did not; it is not an exag-
geration to say that the book would not be here without them.
I dedicate this book to my husband, Hendrik Wagenaar, who I admire
for many reasons; one of them is that he understands the world better
than I do and has not given up on it. I thank him for his support and
inspiration, and for his love.
List of Figures, Boxes, and Tables

Figures
Figure 1.1. Mapping out the Information Commons 6
Figure 4.1. Imaging device quantifying the maximum
plaque thickness 100
Figures 5.1a and 5.1b. Patient information sheet on the
English care.data initiative 128

Boxes
Box 2.1. Criteria for the categorization of participatory
initiatives and projects 27
Box 8.1. “Seven dimensions of contemporary participation”
by Kelty et al. 193
Box 8.2. Characteristics of meaningful participation 201

Tables
Table 3.1. Types of patient involvement in the creating,
collecting, or providing of data and information
in the health domain 69
Table 5.1. Three types of prosumption in the context of
health information 120
Table 8.1. Four models of empowerment 192
Table 8.2. Replacing risk-based data governance with
new principles for the governance of data use 205

xi
Technical Terms and Acronyms

ALS: Amyotrophic Lateral Sclerosis, a rapidly progressive neurologi-

cal disease that is also called Lou Gehrig’s disease, or motor neuron
disease.
Amygdala (pl. amygdalae): Two almond-shaped parts of the
brain that play an important role in decision making, memory, and
emotional reactions.
BOP consumers: “Bottom of Pyramid” consumers—the largest but
poorest group of people in the world.
Care.data: A program that would have allowed the English
NHS to share patient data with health care organizations and
commercial companies in the UK and beyond. It led to public
resistance due to an alleged lack of transparency about the goals
of the program and the plan to have patients opt-out instead of
opt-in.
Crowdsourcing: A composite of the words “crowd” and “out-
sourcing,” that is, the enlisting of large numbers of people (crowds)
in a task, often online.
CSR: Corporate Social Responsibility refers to programs and strate-
gies that combine profit maximization with the creation of social
benefits.
CT: Computed tomography, a technology in medical imaging.
Deep phenotyping: A person’s phenotype comprises her actual
physical, personal, and behavioral characteristics (to be contrasted
with genotype). Deep phenotyping refers to the description of (often
disease-related) phenotypes using a data-rich approach.
DTC: Direct-to-consumer.
Epigenetics: The study of changes in organisms stemming from
modifications of gene regulation or expression rather than changes
in the DNA sequence.

xiii
xiv | Technical Terms and Acronyms

ESF: The European Science Foundation is a nongovernmental non-

profit association of public and private research-related organiza-
tions in Europe and beyond.
EU: European Union.
FDA: The Food and Drug Administration is the U.S. government
agency responsible for approving medical products, including phar-
maceutical drugs and medical devices.
FTC: The Federal Trade Commission is an independent agency of the
U.S. government, tasked with consumer protection and anticom-
petitive business practices.
GBM: Glioblastoma multiforme, one of the most aggressive and most
common brain tumors.
High- throughput technologies: The computational tools
and methods that enable the simultaneous and rapid examination of
large amounts of genes, proteins, and other substances.
HIPAA: The Health Insurance Portability and Accountability Act was
passed by the U.S. Congress in 1996 and established a set of national
standards for the protection of certain types of health information.
Hippocampus (pl. hippocampi): Parts of the brain that play
important roles, for example, in memory and special processing.
IOM: The Institute of Medicine is a division of the National Academies
of Science, Engineering, and Medicine (NAS).
IoT: The term Internet of Things refers to connected computing
devices (such as sensors) without requiring human-to-human or
human-to-computer interaction. Some people expect that our entire
physical environment will start to wirelessly “talk to” one another in
this way.
IP address: Internet Protocol address, a numeric label assigned to a
device participating in a computer network.
MRI: Magnetic resonance imaging.
MS: Multiple sclerosis.
NAS: U.S. National Academies of Science, Engineering, and Medicine
are private nonprofit institutions providing expert advice to policy
makers, funders, and similar.
NHS: National Health Services, the public health services of England,
Scotland, and Wales.
 Technical Terms and Acronyms | xv

NIH: The National Institutes of Health in the United States, a re-

search agency within the U.S. Department of Health and Human
Services.
ODL metrics: Metrics for observations of daily living. ODL met-
rics can be very personal sensory and behavioral indicators for
the purpose of health monitoring (and often also for behavior
modification).
Omics: Derived from terms such as biome or genome, “Omics” is an
umbrella term for the study of datasets representing different types
of molecules in a cell. More recently also disciplines outside of biol-
ogy have started to use the “Omics” label to denote the analysis of
large sets of social or demographic data.
Privacy- by- Default: An approach that prescribes that only the
minimum set of personal data necessary for a purpose should be
processed, and that service providers need to offer customers the
strictest possible privacy setting by default. It is enshrined in the
General Data Protection Regulation in Europe.
Privacy- by- Design: An approach committed to designing privacy-
enhancing measures into hardware and software. It was originally
developed by Ontario’s information and privacy commissioner, Ann
Cavoukian, and is now enshrined in a number of laws and regula-
tions, including the General Data Protection Regulation in Europe.
PROM: Patient-reported outcome measures.
Prosuming: A composite of the words “producing” and “consum-
ing,” referring to the practice of users or consumers creating value
for corporations by producing some or all of the content or products
that they then consume (for example, social media).
Redlining: Discrimination against specific groups of people on the
basis of socioeconomic, behavioral, or other profiling. Redlining is
often used to refer to practices that are not illegal (such as not offer-
ing certain discounts in specific ZIP codes, or not offering shipment
to some regions).
Smart glasses: Eyeglasses that are wearable computers.
Social biomarkers: Information reflecting nonsomatic character-
istics of patients that matter to them in connection with their health
care.
xvi | Technical Terms and Acronyms

STS: Science and Technology Studies, an interdisciplinary field of

studying how scientific knowledge and technologies are produced in
conjunction with social and political order.
Theranostics: A composite of the terms “therapeutics” and “diag-
nostics.” It refers to strategies to combine diagnostic and therapeutic
capabilities in one single agent or process to tailor both more closely
to individual characteristics and needs of patients.