The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility

doi:10.1017/CBO9781139875981

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 flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers the right to know and the right not to know about your own and others' genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity 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.

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Contents

Frontmatter
pp i-vi
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Contents
pp vii-viii
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List of contributors
pp ix-xii
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Acknowledgements
pp xiii-xiv
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Introduction
pp 1-10
- By Ruth Chadwick, Cardiff University , Mairi Levitt, Lancaster University , Darren Shickle, University of Leeds
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Part I - Philosophical and legal issues
pp 11-12
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1 - The right to know and the right not to know: the emerging debate
pp 13-23
- By Ruth Chadwick, Cardiff University , Mairi Levitt, Lancaster University , Darren Shickle, University of Leeds
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2 - Autonomy and a right not to know
pp 24-37
- By Jørgen Husted, Aarhus University
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3 - Privacy and the right not to know: a plea for conceptual clarity
pp 38-52
- By Graeme Laurie, University of Edinburgh
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Part II - Issues in genetics
pp 53-54
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4 - Biobanks and feedback
pp 55-69
- By Kadri Simm, University of Tartu
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5 - Suspects, victims and others: producing and sharing forensic genetic knowledge
pp 70-84
- By Robin Williams, Durham University, Matthias Wienroth, Northumbria University
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6 - Empowered by choice?
pp 85-99
- By Mairi Levitt, Lancaster University
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7 - DIY genetics: the right to know your own genome
pp 100-115
- By Barbara Prainsack, King’s College London
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8 - Genomics, inconvenient truths and accountability
pp 116-130
- By Jeantine Lunshof, Harvard Medical School, Ruth Chadwick, Cardiff University
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Part III - Emerging issues
pp 131-132
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9 - The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy
pp 133-150
- By Henk Ten Have, Duquesne University
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10 - The parental love argument against ‘designing’ babies: the harm in knowing that one has been selected or enhanced
pp 151-164
- By Anca Gheaus, Sheffield University
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11 - The press and the public interest
pp 165-179
- By Joachim Allgaier, Alpen-Adria-Universität Klagenfurt
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12 - The inescapability of knowing and inability to not know in the digital society
pp 180-195
- By Richard Watermeyer, Cardiff University
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13 - The food we eat: the right to be informed and the duty to inform
pp 196-208
- By Michiel Korthals, Wageningen University
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Index
pp 209-216
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The Right to Know and the Right Not to Know

Genetic Privacy and Responsibility

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Contents

Frontmatter
pp i-vi

Contents
pp vii-viii

List of contributors
pp ix-xii

Acknowledgements
pp xiii-xiv

Introduction
pp 1-10

Part I - Philosophical and legal issues
pp 11-12

1 - The right to know and the right not to know: the emerging debate
pp 13-23

2 - Autonomy and a right not to know
pp 24-37

3 - Privacy and the right not to know: a plea for conceptual clarity
pp 38-52

Part II - Issues in genetics
pp 53-54

4 - Biobanks and feedback
pp 55-69

5 - Suspects, victims and others: producing and sharing forensic genetic knowledge
pp 70-84

6 - Empowered by choice?
pp 85-99

7 - DIY genetics: the right to know your own genome
pp 100-115

8 - Genomics, inconvenient truths and accountability
pp 116-130

Part III - Emerging issues
pp 131-132

9 - The right to know and the right not to know in the era of neoliberal biopolitics and bioeconomy
pp 133-150

10 - The parental love argument against ‘designing’ babies: the harm in knowing that one has been selected or enhanced
pp 151-164

11 - The press and the public interest
pp 165-179

12 - The inescapability of knowing and inability to not know in the digital society
pp 180-195

13 - The food we eat: the right to be informed and the duty to inform
pp 196-208

Index
pp 209-216

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The Right to Know and the Right Not to Know

Genetic Privacy and Responsibility

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