Parental Responsibility in the Context of Neuroscience and
Genetics
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Preface and Acknowledgments
New technological developments and scientific advances raise increasingly
complex questions about the nature and extent of parental responsibility.
Findings in the field of genetics and embryology, as well as new
understandings of how our brains work and develop, complicate these
matters even more. This creates a need to reflect on the ways in which
parental responsibility can or should be operationalised in the face of these
new challenges – a task we undertake in this volume.
The idea behind this volume arose over a lunchtime discussion between
the editors, then colleagues at Maastricht University, in the spring of 2013.
Having discovered a common thread in our respective research projects, we
organised a symposium on parental responsibility later that year. The Centre
for Society and the Life Sciences in the Netherlands supported this
initiative, and the symposium was a great opportunity for us to learn more
about how parental responsibility is reflected in each of our own research
areas. It was this symposium that led us ultimately to the publication of the
present volume.
We wish to thank the contributors for their work and their patience in
preparing this volume. We also thank Rebecca Bennett, Inge Liebaers and
David Shaw for reviewing some of the chapters and the participants at the
symposium for their helpful comments.
Kristien Hens
Daniela Cutas
Dorothee Horstkötter
Biographies
Gunnar Björnsson is professor of philosophy at Umeå University,
Sweden, where he is the principal investigator of the ‘Responsibility in
Complex Systems’ project, which looks at issues of individual, shared and
collective moral responsibility and relations between these. He is also the
coordinator of the Moral Responsibility Research Initiative at the
University of Gothenburg, which brings together researchers with applied
and foundational interests in issues of moral responsibility. He has
published on a wide variety of topics, including causation and conditionals,
but his research focuses primarily on issues in meta-ethics and moral
responsibility and he has been published in, e.g., Mind , Ethics , Philosophy
and Phenomenological Research , Noûs , Philosophical Studies and
Australasian Journal of Philosophy .
Anna M.T. Bosman is professor at the Department of Special
Education and the Behavioural Science Institute of Radboud University,
Nijmegen, the Netherlands. Her research involves effective instruction of
reading and spelling in dyslexia as well as the interaction between support
staff and children or young adults with mild intellectual disabilities and
behavioural problems. She currently teaches the master course ‘Complex
systems theory’. An important recent publication related to the contribution
in this volume is Bosman et al.’s (2013) ‘From the Role of Context to the
Measurement Problem: The Dutch Connection Pays Tribute to Guy Van
Orden’ ( Ecological Psychology, 25, 240–247).
Bengt Brülde is professor of practical philosophy at the University of
Gothenburg, Sweden. His current work focuses on climate ethics, the
philosophy of love and friendship and collective and shared responsibility
(he is a participant in the ‘Responsibility in Complex Systems’ project,
funded by the Bank of Sweden Tercentenary Foundation). He has published
on a wide variety of topics, including well-being, the concepts of health and
disorder, the ethics of happiness and suffering, the meaningful life,
bioethics, business ethics, public health ethics, global justice and
enhancement. He is a member of the editorial board of the Journal of
Happiness Studies and was until recently coeditor of philosophy for the
same journal.
Daniela Cutas is associate professor of practical philosophy at Umeå
University as well as at the University of Gothenburg, Sweden. She is the
principal investigator of the ‘Close Personal Relationships, Children and the
Family: Ethical and Political Analysis Against a Changing Background’
project, funded by the Swedish Research Council. Her current work focuses
on the ethics of close personal relationships, reproduction and parenting and
more broadly on bioethics and research ethics. She has published in these
research areas in journals such as Bioethics , Cambridge Quarterly of
Healthcare Ethics , Human Fertility , Reproductive BioMedicine Online ,
Journal of Medical Ethics , Health Care Analysis , Science and Engineering
Ethics and Hypatia . She is a coeditor of the collective volume Families:
Beyond the Nuclear Ideal (2012) (with Sarah Chan).
Guido de Wert is professor of biomedical ethics at Maastricht
University. He is head of the Department of Health, Ethics and Society. His
research interests concern the ethics of reproductive genomics and genetic
testing. He is a member of the Health Council of the Netherlands.
Wybo Dondorp is associate professor of biomedical ethics at
Maastricht University. He has previously worked as an ethicist for the
Health Council of the Netherlands. His research interests concern the ethics
of medically assisted reproduction and of screening policies. He is a
member of the Committee on Late Abortion of the Dutch Society of
Obstetrics and Gynaecology.
Kathleen Emmery is coordinator at the Knowledge Center of the
Higher Institute for Family Sciences (University College Odisee, Brussels).
She studied criminology (master) at the University of Ghent. Her main
research topics are family policies and relationship support in Flanders.
Ademola Kazeem Fayemi is lecturer at Lagos State University,
Nigeria, where he teaches classes on ethics, African philosophy and
sociopolitical philosophy. He is a fellow of the Erasmus Mundus European
Master programme in bioethics, Catholic University of Leuven. He has
published widely in international and national journals of philosophy,
bioethics and African studies. His interests are in Yoruba philosophy,
bioethics and research ethics in Africa.
Frans J.M. Feron has a background in medicine, is trained as a
medical doctor (MD) and officially registered as a medical specialist in
community health and social medicine in the field of child and youth health
care. In addition, he is professor in social medicine, in particular child and
adolescent health, and chair of the Department of Social Medicine at
Maastricht University. He has 35 years of expertise in preventive paediatric
primary care for children and adolescents at the Youth Health Care Division
of the Regional Public Health Service (GGD), South Limburg. Alongside
his clinical work, he developed a keen interest in neurodevelopmental
issues in children, in child mental health and in early detection and
treatment of psychopathology. He completed his PhD in medicine based on
studies on neurodevelopmental issues in children. His current research
activities focus on health, growth and development of children and
adolescents, in particular mental health and behavioural problems, and
specifically (neuro)developmental issues in children and adolescents.
Farah Focquaert obtained her PhD in 2007 from the University of
Ghent in Belgium. She is a visiting professor of public health ethics at
HoWest College, Oostende, and a research fellow at the Bioethics Institute
Ghent, University of Ghent. Her work is predominantly situated in the
fields of neuroethics and philosophy of free will. Her current research
focuses on the ethics of moral enhancement, the ethics of neuromodulation
for treatment and enhancement (e.g. questions related to narrative identity,
regulation, assent/consent and criminal behaviour) and the implications of
the philosophy and neuroscience of free will for the criminal justice system.
She was a visiting research fellow at the Center for Cognitive
Neuroscience, Dartmouth College, and a visiting scholar at the Department
of Criminology and the Center for Neuroscience and Society, University of
Pennsylvania. She is the chair of the Ethics Committee at the Forensic
Psychiatric Center in Ghent, a research fellow of the Research Foundation
Flanders and a member of the Moral Brain research group.
Simona Giordano is reader in bioethics at the Centre for Social Ethics
and Policy, University of Manchester. She has been researching on
nonconforming gender identity, and she has published Children with
Gender Identity Disorder (Routledge, 2012), as well as many articles on the
topic. She is regularly involved with charities supporting trans-acceptance
in the UK and has worked for the amendment of clinical practice relating to
minors with gender dysphoria in the UK and abroad.
Francisco Güell Pelayo is coordinator of the Mind and Brain Group at
the Institute for Culture and Society at the University of Navarra (UNAV),
Spain. His research interests include epigenetics, embryo development,
bioethics and addiction. He has completed extended research stays at King’s
College, London, Georgetown University and the University of Stanford.
He has published one book about the epigenetics of embryo development
and over 15 articles in the past three years. He has attended over 50
international congresses and has been an invited speaker at the Kennedy
Institute of Bioethics, the Center for Clinical Bioethics of Georgetown
University, the School of Health and Social Care at Oxford Brookes
University and Universidad Austral, Argentina. He is associate professor of
the Philosophy Department at UNAV and invited professor on the master of
bioethics course at Rey Juan Carlos University, Madrid.
Kristien Hens is a bioethicist whose work focuses on ethical issues
related to genetics, reproductive medicine, feminism, disability studies and
neurodiversity (autism, ADHD). She is currently working as a postdoctoral
researcher at the Department of Philosophy of the University of Antwerp
investigating the ethical issues related to biological explanations of autism.
She is also a research fellow at the Centre for Biomedical Ethics and Law
of the KU Leuven. Before that she worked as postdoctoral researcher on the
ethics of embryo selection, at Maastricht University, and as a PhD student
at the KU Leuven on the ethics of the use of stored tissue samples from
children for research. She has published in several medical and ethics
journals, including Journal of Medical Ethics , Human Reproduction and
European Journal of Human Genetics .
Peter Herissone-Kelly is a philosopher who has published widely in
bioethics, with papers and book chapters on the ethics of new reproductive
technologies, the desirability (or otherwise) of genetic enhancement and the
theoretical foundations of bioethical inquiry. He is also coeditor of a
number of edited collections on bioethics. He is senior lecturer in
philosophy at the University of Central Lancashire, UK, where he teaches
classes on, amongst other things, philosophy of language, metaphysics,
epistemology and meta-ethics. He holds degrees from the Universities of
Bolton, Oxford and Central Lancashire.
Dorothee Horstkötter is assistant professor at the Department of
Health, Ethics and Society, School of Mental Health and Neuroscience
(MHeNS), at Maastricht University in the Netherlands. She is trained as a
philosopher, biologist and educational scientist. She obtained her PhD at
Radboud University, Nijmegen, the Netherlands, with a thesis in philosophy
entitled ‘Self-Control Revisited: Varieties of Normative Agency’. She is the
principal investigator of the project ‘Parents who are alcoholics, Towards a
normative framework of integrative care and responsible parenting
interventions’ funded by the Netherlands Organisation of Health Research
and Development. Her research covers neuroethics, bioethics, public health
ethics, medical humanities and philosophy of action with a special focus on
(child) mental health issues. Her publications have appeared in Bioethics ,
BioSocieties , Theory & Psychology , International Journal of Law and
Psychiatry and The American Journal of Bioethics Neuroscience , as well as
in various Dutch and German professional journals.
Sylvia Hübel is a researcher in the Department of Theological and
Comparative Ethics at the KU Leuven in Belgium. She holds an MA degree
in family and sexuality studies and theology. She worked as a researcher in
the framework of this practice-oriented project on prenatal diagnosis at the
Higher Institute for Family Sciences (University College Odisee of
Brussels) between 2011 and 2013. Her research interests include medical
humanities, bioethics, women’s studies, family and sexuality sciences.
Adelheid Rigo is lecturer and researcher in psychology and bioethics at
the Higher Institute for Family Sciences of University College Odisee
(Brussels). She studied philosophy (master, PhD), moral sciences (bachelor)
and clinical psychology (master) at the Free University of Brussels (VUB).
Her main research topics concern the ethical aspects of preimplantation
genetic diagnosis with HLA typing, ethics and genetics and prenatal
diagnosis (e.g. NIPT). She worked on several scientific projects in this area
both as researcher and supervisor. The latest supervised project ‘Prenatal
Screening and Diagnosis: A Moral Imperative?’ is a collaboration between
the Odisee and the VUB.
Elena V. Syurina is a researcher at the Athena Institute for Research on
Innovation and Communication in Health and Life Sciences, Faculty of
Earth and Life Sciences, Vrije Universiteit, Amsterdam, the Netherlands
and assistant professor at the Department of Health, Ethics and Society,
School of Public Health and Primary Care (CAPHRI) Maastricht
University, the Netherlands. She has a mixed background including public
health, public policy analysis, child and youth health care and
neuropsychology. Her present research revolves around the possibilities of
changing the existing primary health system to make it more personalised.
Another special interest is mental health of children and how it can be
improved. An important publication related to the chapter in the present
volume is “What about FH of my child?” Parents’ opinion on family history
collection in preventive primary pediatric care, by Syurina et al., published
in Personalized Medicine .
Hans Van Crombrugge is senior lecturer in educational theory and
family pedagogy at the Higher Institute for Family Sciences of University
College Odisee (Brussels). He studied educational sciences at the KU
Leuven. He has previously been a junior researcher at the Faculty of
Psychology and Educational Sciences of the KU Leuven, director of the
educational project ‘Open Year’ of the KU Leuven and lecturer of
foundations of educational theory and family pedagogy at the University of
Ghent. His research and publications deal with theory and history of
educational thought in general. Some more specific research topics are the
ethics of parent-child relationships, concepts of kinship, liberal education
and plurality of worldviews, history and theory of Christian and Islamic
philosophy of education and family life education.
Abbreviations
ADHD Attention Deficit Hyperactivity Disorder
APA American Psychiatric Association
ART Assisted Reproductive Technology
ASD Autism Spectrum Disorder
BOPZ Bijzondere Opnemingen in Psychiatrische Ziekenhuizen
(Psychiatric Hospitals Compulsory Admissions Act)
CBCL Child Behaviour Checklist
CEOAE Click-evoked otoacoustic emissions
CP Cerebral palsy
CYHC Child and Youth Health Care
DBS Deep brain stimulation
DNA Desoxyribonucleic acid
DSM Diagnostic and Statistical Manual of Mental Disorders
FAS Foetal alcohol syndrome
FASD Foetal alcohol spectrum disorders
FDA Food and Drug Administration
GP General practitioner
HCP Health Care Professional
ICSI Intracytoplasmic sperm injection
IDRPD International Declaration on the Rights of Persons with
Disabilities
IVF In vitro fertilisation
MBLC Molecular Biology Laboratory Centre
MCC Mother and Child Clinic
NAS Neonatal abstinence syndrome
NGO Non-governmental organisation
NIPT Non-invasive prenatal testing
NNPC Nigerian National Petroleum Corporation
OAE Otoacoustic emissions
OCD Obsessive-compulsive disorder
PD Parkinson’s disease
PDD-NOS Pervasive developmental disorder – not otherwise specified
PFC Prefrontal cortex
PGD Preimplantation genetic diagnosis
PND Prenatal diagnosis
PNS Prenatal screening
PNT Prenatal testing
PPB Principle of procreative beneficence
RNA Ribonucleic acid
RPHS Regional Public Health Service
SCA Sickle-cell anaemia
SDQ Strengths and Difficulties Questionnaire
SRY Sex-determining region of Y (chromosome)
TDF Testis development factor
TS Tourette syndrome
WHO World Health Organization
WISC Wechsler Intelligence Scale for Children
WMA World Medical Association
Contents
1 Parental Responsibility:A Moving Target
Kristien Hens, Daniela Cutas and Dorothee Horstkötter
2 Normative Responsibilities:Structure and Sources
Gunnar Björnsson and Bengt Brülde
3 Disorders Are Reduced Normativity Emerging from the Relationship
Between Organisms and Their Environment
Anna M. T. Bosman
4 Advances in Genetics and Neuroscience:A Challenge for
Personalizing Child and Youth Health Care?
Elena V. Syurina and Frans J. M. Feron
5 Raising Self-Controlled Children.A Philosophical Analysis of
Neuroscience and Social Psychology Perspectives
Dorothee Horstkötter
6 Direct Electrical Stimulation of the Developing Brain:Who Decides?
Farah Focquaert
7 Neurological Diversity and Epigenetic Influences in Utero.An Ethical
Investigation of Maternal Responsibility Towards the Future Child
Kristien Hens
8 Prenatal Child Protection.Ethics of Pressure and Coercion in
Prenatal Care for Addicted Pregnant Women
Wybo Dondorp and Guido de Wert
9 The Confused Stork:Gender Identity Development, Parental and
Social Responsibilities
Simona Giordano
10 The Lack of an Obligation to Select the Best Child:Silencing the
Principle of Procreative Beneficence
Peter Herissone-Kelly
11 Parental Responsibility and the Principle of Procreative Beneficence
in Light of Assisted Reproductive Technologies
Francisco Güell Pelayo
12 Should Parents Take Active Steps to Preserve Their Children’s
Fertility?
Daniela Cutas
13 Family Responsibilitiesand Genetic Disorders in Yoruba Culture:
The Example of Sickle Cell Anaemia
Ademola Kazeem Fayemi
14 Parental Autonomy and Responsibility in the Context of Prenatal
Diagnosis.Views and Attitudes of Belgian Healthcare Professionals and
Families
Sylvia Hübel, Adelheid Rigo, Kathleen Emmery and
Hans Van Crombrugge
Author Index
Subject Index
Contributors
Gunnar Björnsson
Umeå University, Umeå, Sweden
Anna M. T. Bosman
Faculty of Social Sciences, Behavioural Science Institute, Radboud
University Nijmegen, Nijmegen, The Netherlands
Bengt Brülde
Department of Philosophy, Linguistics and Theory of Science, University of
Gothenburg, Gothenburg, Sweden
Daniela Cutas
Department of Historical, Philosophical and Religious Studies, Umeå
University, Umeå, Sweden
Department of Philosophy, Linguistics and Theory of Science, University of
Gothenburg, Gothenburg, Sweden
Wybo Dondorp
Department of Health, Ethics & Society, School for Public Health and
Primary Care (CAPHRI), Maastricht University, Maastricht, The
Netherlands
Kathleen Emmery
Knowledge Center, Higher Institute for Family Studies, University College
Odisee, Brussels, Belgium
Ademola Kazeem Fayemi
Department of Philosophy, University of Lagos, Lagos, Nigeria
Frans J. M. Feron
Bioethics Institute Ghent, Department of Social Medicine, School for
Public Health and Primary Care (CAPHRI), Maastricht University,
Maastricht, The Netherlands
Farah Focquaert
Department of Philosophy and Moral Sciences, Ghent University, Ghent,
Belgium
Simona Giordano
School of Law, The University of Manchester, Manchester, UK
Francisco Güell Pelayo
Mind-Brain Group, Institute for Culture and Society (ICS), Universidad de
Navarra, Edificio Bibliotecas (ICS) – Campus Universitario, Pamplona,
Spain
Kristien Hens
Department of Philosophy, University of Antwerp, Antwerp, Belgium
Peter Herissone-Kelly
School of Humanities and Social Sciences, University of Central
Lancashire, Preston, UK
Dorothee Horstkötter
Department of Health, Ethics and Society, School of Mental Health and
Neuroscience (MHeNS), University of Maastricht, Maastricht, The
Netherlands
Sylvia Hübel
Knowledge Center, Higher Institute for Family Studies, University College
Odisee, Brussels, Belgium
Adelheid Rigo
Higher Institute for Family Studies, University College Odisee, Brussels,
Belgium
Elena V. Syurina
Athena Institute for Research on Innovation and Communication in Health
and Life Sciences, Faculty of Earth and Life Sciences, Vrije Universiteit,
Amsterdam, The Netherlands
Department of Health, Ethics and Society, School for Public Health and
Primary Care (CAPHRI), Maastricht University, Maastricht, The
Netherlands
Hans Van Crombrugge
Higher Institute for Family Studies, University College Odisee, Brussels,
Belgium
Guido de Wert
Department of Health, Ethics & Society, School for Public Health and
Primary Care (CAPHRI), Maastricht University, Maastricht, The
Netherlands
