Genomics and society : legal, ethical and social dimensions

278 Pages·2006·3.005 MB·English

by  George Gaskell, Martin W Bauer

GENOMICS
& SOCIETY

LEGAL, ETHICAL & SOCIAL DIMENSIONS
EDITED BY
GEORGE GASKELL & MARTIN W. BAUER
Genomics and Society
Science in Society Series
Series Editor: Steve Rayner,
James Martin Institute, University of Oxford
Nanotechnology
Risk, Ethics and Law
Edited by Geoffrey Hunt and Michael Mehta
Genomics and Society
Legal, Ethical and Social Dimensions
Edited by
George Gaskell and Martin W. Bauer

London • Sterling, VA
First published by Earthscan in the UK and USA in 2006
Copyright © 2006, George Gaskell and Martin W. Bauer
All rights reserved
ISBN-13: 978-1-84407-113-5 hardback
ISBN-10: 1-84407-113-8 hardback
Typesetting by Keystroke, Jacaranda Lodge, Wolverhampton
Printed and bound in the UK by TJInternational Ltd, Padstow, Cornwall
Cover design by Susanne Harris
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A catalogue record for this book is available from the British Library
Library of Congress Cataloging-in-Publication Data
Genomics and society : legal, ethical and social dimensions / edited by George Gaskell

and Martin Bauer.
p. ; cm.
Includes bibliographical references.
ISBN-13: 978-1-84407-113-5 (hardback)
ISBN-10: 1-84407-113-8 (hardback)
1. Medical genetics. 2. Genomics. 3. Medical genetics–Social aspects. 4. Medical
genetics–Moral and ethical aspects. 5. Genomics–Social aspects. 6. Genomics–Moral
and ethical aspects.
[DNLM: 1. Genetic Engineering–ethics. 2. Genomics–ethics. 3. Bioethical Issues.
4. Organisms, Genetically Modified. 5. Public Policy. WB 60 G335 2006]. I. Gaskell,
George. II. Bauer, Martin W.
QH438.7.G46 2006
174′.957–dc22
2006000302
The paper used for the text pages of this book is FSC certified.
FSC (The Forest Stewardship Council) is an international network
to promote responsible management of the world’s forests.
Printed on totally chlorine-free paper
Contents
List of Figures, Tables and Boxes viii
List of Contributors x
Acknowledgements xiv
List of Acronyms and Abbreviations xv
1 The Genomic Society and its Public: Introduction 1
George Gaskell and Martin W. Bauer
Part 1 Emerging Issues and Debates 7
2 Dilemmas of Genetic Information 9
What is genetic information? 9
Uses of genetic information in the European context 12
Particularities of genetic information 18
Power and hierarchy: The lay–expert divide 22
Limitations of genetic prediction and intergenerational responsibility 23
Some paradoxes by way of conclusion 25
Urs Dahinden, Nicola Lin dsey, Aglaia Chatjouli, Carmen Diego,
Bjorn Fjæstad, Marisa Matias, João Arriscado Nunes and Timo Rusanen
3 Spare Parts for Human Bodies 28
A common horizon 30
Different stories in different countries 32
Controversy and debate 40
Suzanne de Cheveigné, Edna Einsiedel and Jürgen Hampel
4 Moving the Goalposts in Bioethics 44
Institutionalization of bioethics in Europe 45
Future directions 55
Erling Jelsøe, Arne Thing Mortensen, Mercy Wambui Kamara,
Maria Rusanen, Susana Costa, Torben Hviid Nielsen and Nicola Lindsey
5 Whom to Trust with Genes on the Menu? 60
The public perception of GM food 61
Trust in information sources 62
The formation of attitudes on GM food 65
vi Contents
Methods 67
Results 69
Complexities in message reception 70
Matthias Kohring, Anneloes Meijnders, Cees Midden, Susanna Öhman,
Anna Olofsson, Jörg Matthes, Maria Rusanen, Jan Gutteling and
Tomasz Twardowski
Part 2 The Efficacy of Public Opinion 75
6 Public Mobilization and Policy Consequences 77
Policy shift and the moratorium 78
Possible explanations for the policy shift 79
The concept of public outrage 79
The role of public outrage in policy shift 80
Public outrage or mobilization 87
Mobilization as a social construct 89
Demobilization 90
Jürgen Hampel, Petra Grabner, Helge Torgersen, Daniel Boy,
Agnes Allansdottir, Erling Jelsøe and Georgios Sakellaris
7 The Coming of Age of Public Participation 95
The trajectory of biotechnology and its applications and the role of
publics 96
The institutionalization of public participation? 98
Features of institutionalization of public participation 100
The road to institutionalization 103
Whither institutionalization? 108
Edna Einsiedel and Mercy Wambui Kamara
8 Issue Salience and Me dia Framing over 30 Years 113
The role of the media in the formation of public opinion 114
News values and the relative autonomy of the mass media 117
Changes in salience and framing of biotechnology over the years 119
The impact of the media 125
Martin W. Bauer and Jan M. Gutteling
9 The Politics of Bioethics 131
The derivation of a scientific discovery 131
Restoration to immortality: The promise of a regenerative medicine 135
Playing God? Old ethical concerns in new voices 137
Adult stem cells as Nature’s own solution? 138
Therapeutic cloning as humankind’s techno-fix? 141
The political ethics of human embryonic stem cells 142
Torben Hviid Nielsen
10 The Monster in the Public Imagination 150
Matters out of place, monsters and monstrosity 150
Contents vii
The ever-changing monster 151
Monsters in newspaper photographs and cartoons about
biotechnology 152
Imagining genetic hybrids: Blended essence and emergent
monstrosity 159
The contemporary message of monsters 162
Wolfgang Wagner, Nicole Kronberger, Siv Froydis Berg and
Helge Torgersen
Part 3 Global Perspectives 169
11 Towards a Global Pop Culture of Genes? 171
The value of popular culture 172
Jurassic Park 173
Genetic realities: Fish and sports 175
Popular culture in the news 178
No clear winners or losers 181
Toby Ten Eyck
12 Competing Voices, Contrasting Frames in North America 186
Attentive and engaged publics 186
Understanding other audiences 188
Media messages and gene technologies 191
Rethinking audiences 193
Susanna Hornig Priest
13 Transatlantic Tensions over GM Crops and Foods:
Diverging perspectives 197
The climate of public opinion 199
What drives the perception of risks and benefits 204

Conclusions 208
George Gaskell, Jonathan Jackson, Toby Ten Eyck, Edna Einsiedel
and Susanna Hornig Priest
14 The Japanese Experience 212
The development of mass mediated discourse 212
The law on cloning 2001: The regulatory discourse 218
The discourse of everyday conversations 222
Cross-cultural similarities 224
Motohiko Nagata, Aiko Hibino, Toshio Sugiman, and Wolfgang Wagner
15 Paradoxes of Resistance in Brazil 228
Climates of opinion and the public debate 229
Resistance: Local failure – global success 238
Conclusions: Explaining Brazilian paradoxes 242
Martin W. Bauer
Index 250
List of Figures, Tables and Boxes
Figures
8.1 The intensity of biotechnology coverage, and the rated evaluation
of biotechnology 121
8.2 The ranking of risk discourse according to the index = benefit –
(risk + mixed) for two time periods 122
8.3 Percentage of articles referring to some themes of biotechnology 124
9.1 ‘Isolation’ and ‘Derivation’ 134
9.2 The possible plasticity of adult stem cells 139
9.3 The ontological hierarchy of stem cells 140
10.1 Cartoon– ‘Even the ancient Greeks… Of course we have to keep
them in a hidden place, otherwise this uproar about ethics and
genetic engineering will start again!’ by Dieter Zehentmaier 153
10.2 Cartoon– ‘News from the (gene-)lab: I’m curious whether
Professor Fleischmann was successful with his new growth
formula’ by Harry O’Feem 154
10.3 Cartoon – ‘Genes? Where?’ by Jean Veenenbos 155

10.4 Picture – ‘Retailers react to the consumer’s request, which is:
genetechnology-free food’ 156
10.5 Picture – ‘A normal mouse beside the two to three times stronger
genetically manipulated one’ 158
10.6 Locations of dog, goldfish and the resulting genetic hybrid in
the two-dimensional space of a correspondence analysis
(Experiment 1) 160
10.7 Locations of three wild and three domesticated natural animals as
gene recipients or gene donors and their genetic hybrids in the
two-dimensional space of a correspondence analysis (Experiment 1)161
11.1 Content of articles 180
12.1 Education, knowledge and attitudes: US 2000 187
12.2 Canadian and US distributions (per cent) 189
12.3 Stem cell ‘frames’ 192
13.1 Technological optimism, 2002 200
13.2 Index of optimism about biotechnology, 1996–2002 201
13.3 Change in risk–benefit groups on GM food, 1996–2002 203
List of Figures, Tables and Boxes ix
14.1 Number of newspaper articles on modern biotechnology in Japan,
1985–2000 213
14.2 Graph of the correspondence analysis of cross-tabulation of red,
green and cloning applications in Phases 2 and 3 by frames 217
14.3 Graph of the correspondence analysis of cross-tabulation of red,
green and cloning applications in Phases 2 and 3 by themes 218
15.1 Density of GM-related public and political events in Rio Grande
do Sul, 1998–2001 230
15.2 Number of press articles per month about transgênicosin Rio
Grande do Sul, appearing in the newspaper Zero Hora 231
15.3 Percentage of press articles in Zero Horaand Correio do Povoduring
March 1999 and March 2000 that frame the issues of GM crops
in a particular manner 232
15.4 Brazilian soya exports for various destinations from 1995 to 2003 240
Tables
5.1 Number of participants per cell 68
5.2 Effect of source trustworthiness and message valence on attitude
change 69
8.1 Examples of ‘news values’ implicitly or explicitly guiding news
selection 118
8.2 Distribution of the corpus of newspaper articles across countries
during the periods 1973–1996 and 1997–2002, and intensity of
coverage 129
11.1 Description of reporting, 1990–2001 179
13.1 Risk–benefit groups for GM crops and GM food 202
13.2 Menacing images of GM food 204

13.3 Trust in the food chain 205
13.4 Environmental and economic values 206
13.5 Contrasting the ‘sceptical’ and ‘trade-off’ groups 207
14.1 Media profile of Japan and Europe 214
14.2 Outline of the four focus groups 223
Boxes
2.1 Case study 1: Patents on nature? The ‘Gene Protection Initiative’
in Switzerland 2001 11
2.2 Case study 2: Uman Genomics: Biobanking between public and
private ownership (Sweden) 13
2.3 Case study 3: The forensic use of genetic information in Portugal 14
2.4 Case study 4: Genetic testing and insurance in the UK 16
2.5 Case study 5: The role of genetic information in reproduction
among same-sex couples in Finland 19