Table Of ContentGENETIC PRIVACY
An Evaluation of the Ethical and Legal Landscape
b1483 Genetic Privacy: An Evaluation of the Ethical and Legal Landscape
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GENETIC PRIVACY
An Evaluation of the Ethical and Legal Landscape
edited by
Terry Sheung-Hung Kaan
Calvin Wai-Loon Ho
National University of Singapore, Singapore
Imperial College Press
ICP
Published by
Imperial College Press
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Distributed by
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UK office: 57 Shelton Street, Covent Garden, London WC2H 9HE
Library of Congress Cataloging-in-Publication Data
Genetic privacy (Imperial College Press)
Genetic privacy : an evaluation of the ethical and legal landscape / edited by Terry Sheung-Hung
Kaan, Calvin Wai-Loon Ho.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-78326-305-9 (hbk. : alk. paper)
I. Kaan, Terry, editor of compilation. II. Ho, Calvin Wai-Loon, editor of compilation. III. Title.
[DNLM: 1. Genetic Privacy--ethics. 2. Bioethical Issues. 3. Genetic Privacy--legislation &
jurisprudence. 4. Genetic Testing--ethics. QZ 21]
RB155.5
174.2'96042--dc23
2013022067
British Library Cataloguing-in-Publication Data
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b1483 Genetic Privacy: An Evaluation of the Ethical and Legal Landscape
Editors’ Note and Acknowledgements
The compilation in this volume is the result of the collaborative efforts of a
group of scholars studying the different notions of privacy in the context of
genetics, across different jurisdictions and disciplines. Our research is moti-
vated by a shared recognition of the continuing relevance, and indeed, grow-
ing importance of privacy, as well as the need to think broadly about what it
encompasses and its implications for genetic science and medicine. In recent
years, there have been important changes in genetic science and technology,
as well as in the ethical and legal landscape. In Singapore, for instance, genetic
privacy has been a focus of two reports published by the Bioethics Advisory
Committee (BAC) in November 2005 and May 2007. The recommendations
in these reports introduced important changes to ethical governance of medi-
cal genetics and genetic research in the country, and further contributed to
legal and regulatory changes. More recently, legislation on personal data pro-
tection has been enacted in 2012. Beyond Singapore, the European Union is
reviewing its Data Protection Directive, even as a scientific research has dem-
onstrated the limitation of de-identification as a privacy safeguard. In the
light of these developments, continuing discussions at a broad level on the
theme of privacy and in the context of genetic information is both timely and
expedient.
This book would not have been possible without the insights and partici-
pation from our contributors. We are honoured to have had the opportunity
to work with them, and thank them for their patience, accommodation and
cooperation. Unless otherwise stated, all links to Internet websites stated in
this book have been verified to be correct and active as of 23 February 2013.
Although a number of the contributors to this book are (or have been) closely
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b1483 Genetic Privacy: An Evaluation of the Ethical and Legal Landscape
vi Editors’ Note and Acknowledgements
connected to the BAC, all opinions and views expressed are personal to the
authors and do not necessarily represent the views of the BAC or any other
organisation. In addition, we are grateful to many individuals (not all of
whom could be explicitly acknowledged here), who have generously sup-
ported this project through reviewing the contributions in this volume or
through sharing of their views, knowledge and experiences. These individuals
include Professor Lim Pin (immediate past Chairman of, and Emeritus
Advisor to, the BAC), Professor Martin Bobrow, Associate Professor John M
Elliott, Associate Professor Denise LM Goh, Professor Bartha Knoppers, Dr.
Sylvia SN Lim, Dr. Thomas H Murray, Professor (Baroness) Onora O’Neill
and Professor Hui Kim Yap. We would also like to thank our editor at Imperial
College Press, Ms. Lim Sook Cheng, and also our colleagues Mr. Karel Caals
and Ms. Charmaine KM Chan. This project would not have been possible
without their help, attention and support. Finally, we are indebted to our
families for their support.
Terry SH Kaan
Calvin WL Ho
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b1483 Genetic Privacy: An Evaluation of the Ethical and Legal Landscape
Contents
Editors’ Note and Acknowledgements v
Notes on Contributors ix
1 The Notion of Genetic Privacy 1
Calvin WL Ho and Terry SH Kaan
2 Can Data Protection Secure Personal Privacy? 25
Onora O’Neill
3 Navigating the Privacy Complex of Self, Other and Relationality 41
Calvin WL Ho
4 Privacy and Biomedical Research: A Role-based Approach 77
Anh Tuan Nuyen
5 Socio-political Discourses on Genetic Privacy in Japan 93
Kenji Matsui
6 Genetic Privacy: A Challenge to Genetic Testing in China 125
Chunshui Wang
7 Don’t Ask, Don’t Tell: Exploring the Limits of Genetic Privacy
in Singapore 143
Terry SH Kaan
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b1483 Genetic Privacy: An Evaluation of the Ethical and Legal Landscape
viii Contents
8 Privacy, Rights and Biomedical Data Collections 169
Benjamin Capps
9 I ndividual Right vs. Public Interest: The Role of the Islamic
Religious Council of Singapore in Bioethics Consultation
on Genetic Privacy 203
Nazirudin M Nasir
10 What — If Anything — Is Special about “Genetic Privacy”? 223
Jacqueline JL Chin and Alastair V Campbell
11 Genetic Privacy in the United States: Genetic Exceptionalism,
GINA, and the Future of Genetic Testing 253
Thomas H Murray and Ross S White
12 T he Regulatory Framework for Protection of Genetic Privacy
in Australia 283
Margaret Otlowski and Dianne Nicol
13 Privacy Matters in Nicotine Addiction 323
Yvette van der Eijk
14 Human Genomics and Privacy 341
Oi Lian Kon
Bibliography 359
Index 395
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b1483 Genetic Privacy: An Evaluation of the Ethical and Legal Landscape
Notes on Contributors
Alastair V CAMPBELL, CorrFRSE, MA, BD, ThD, is Chen Su Lan Centennial
Professor of Medical Ethics and Director, Centre for Biomedical Ethics,
Yong Loo Lin School of Medicine, National University of Singapore (NUS).
His books include Health as Liberation (1996), Medical Ethics (with DG Jones
and G Gillett, 4th ed., 2005), The Body in Bioethics (2009) and Bioethics: the
Basics (forthcoming). He is currently a member of the Bioethics Advisory
Committee (BAC) and the National Medical Ethics Committee (NMEC), and
a board member of the National Medical Research Council.
Benjamin CAPPS, BSc (Hon), MA, PhD, is Assistant Professor of Biomedical
Ethics at the Centre for Biomedical Ethics, Yong Loo Lin School of Medicine
at NUS. He is a member of the Human Genome Organisation’s (HUGO)
Committee on Ethics, Law and Society; and previously, the Pro-Tem National
Oversight Committee for Human Animal Combinations in Stem Cell
Research (Ministry of Health, Singapore, 2011–12), and the Neuroethics
Working Group of the BAC (Singapore, 2011–13). His research focuses on the
development of jurisprudential and political theory — particularly in the use
of human rights concepts — in biotechnology and bio-medicine.
Jacqueline JL CHIN, BPhil, DPhil, is Assistant Professor at the Centre for
Biomedical Ethics, Yong Loo Lin School of Medicine, NUS, and jointly
appointed to the Department of Philosophy. She is a member of the National
Transplant Ethics Panel of Laypersons and Co-Director of CENTRES, a
Ministry of Health funded project for the training and support of clinical
ethics committees in public restructured hospitals in Singapore. In addition,
she serves on the Board of Directors of the International Association of
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