The Governance of Genetic Information: Who Decides?

doi:10.1017/CBO9780511635274

This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere.

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Contents

Frontmatter
pp i-vi
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Contents
pp vii-viii
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Notes on contributors
pp ix-x
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Preface
pp xi-xii
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Introduction
pp 1-12
- By Heather Widdows, Caroline Mullen
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SECTION I - Problematising governance of genetic information
pp 13-14
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1 - The medium and the message: tissue samples, genetic information and data protection legislation
pp 15-36
- By Neil C. Manson, Lancaster University
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2 - Me, myself, I – against narcissism in the governance of genetic information
pp 37-50
- By Søren Holm, Cardiff University
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3 - Decisions, consent and expectations of the individual
pp 51-72
- By Caroline Mullen, University of Leeds
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SECTION II - Ethical frameworks of governance
pp 73-74
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4 - Constructing communal models of governance: collectives of individuals or distinct ethical loci?
pp 75-98
- By Heather Widdows, University of Birmingham
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5 - Rights, responsibility and stewardship: beyond consent
pp 99-125
- By Roger Brownsword, King's College, London
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6 - Who decides what? Relational ethics, genetics and well-being
pp 126-148
- By Sarah Wilson, University of Central Lancashire
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SECTION III - Redesigning governance
pp 149-150
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7 - Involving publics in biobank governance: moving beyond existing approaches
pp 151-177
- By Kathryn G. Hunter, Graeme T. Laurie, University of Edinburgh
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8 - Genetic information and public opinion
pp 178-200
- By Andrew Edgar, Cardiff University
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9 - Harmonisation and standardisation in ethics and governance: conceptual and practical challenges
pp 201-213
- By Ruth Chadwick, Heather Strange, Cardiff University
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Bibliography
pp 214-228
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Index
pp 229-235
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The Governance of Genetic Information

Who Decides?

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Contents

Frontmatter
pp i-vi

Contents
pp vii-viii

Notes on contributors
pp ix-x

Preface
pp xi-xii

Introduction
pp 1-12

SECTION I - Problematising governance of genetic information
pp 13-14

1 - The medium and the message: tissue samples, genetic information and data protection legislation
pp 15-36

2 - Me, myself, I – against narcissism in the governance of genetic information
pp 37-50

3 - Decisions, consent and expectations of the individual
pp 51-72

SECTION II - Ethical frameworks of governance
pp 73-74

4 - Constructing communal models of governance: collectives of individuals or distinct ethical loci?
pp 75-98

5 - Rights, responsibility and stewardship: beyond consent
pp 99-125

6 - Who decides what? Relational ethics, genetics and well-being
pp 126-148

SECTION III - Redesigning governance
pp 149-150

7 - Involving publics in biobank governance: moving beyond existing approaches
pp 151-177

8 - Genetic information and public opinion
pp 178-200

9 - Harmonisation and standardisation in ethics and governance: conceptual and practical challenges
pp 201-213

Bibliography
pp 214-228

Index
pp 229-235

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The Governance of Genetic Information

Who Decides?

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