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The Governance of Genetic Information: Who Decides?

Overview

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, Commercialization and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions ...

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The Governance of Genetic Information: Who Decides?

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Overview

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, Commercialization 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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Product Details

  • ISBN-13: 9781107625426
  • Publisher: Cambridge University Press
  • Publication date: 12/5/2013
  • Series: Cambridge Law, Medicine and Ethics
  • Edition description: Reprint
  • Pages: 248
  • Product dimensions: 5.90 (w) x 8.90 (h) x 0.60 (d)

Meet the Author

Dr Heather Widdows is a Senior Lecturer in the Department of Philosophy at the University of Birmingham, where she teaches moral philosophy and bioethics.

Dr Caroline Mullen is a research officer at the Centre for European Law and Legal Studies, School of Law, University of Leeds.

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Table of Contents

Introduction Heather Widdows Widdows, Heather Caroline Mullen Mullen, Caroline 1

Sect. I Problematising governance of genetic in formation 13

1 The medium and the message: tissue samples, genetic information and data protection legislation Neil C. Manson Manson, Neil C. 15

2 Me, myself, I - against narcissism in the governance of genetic information Soren Holm Holm, Soren 37

Sect. II Ethical frameworks of governance 73

3 Decisions, consent and expectations of the individual Caroline Mullen Mullen, Caroline 51

4 Constructing communal models of governance: collectives of individuals or distinct ethical loci? Heather Widdows Widdows, Heather 75

5 Rights, responsibility and stewardship: beyond consent Roger Brownsword Brownsword, Roger 99

6 Who decides what? Relational ethics, genetics and well-being Sarah Wilson Wilson, Sarah 126

Sect. III Redesigning governance 149

7 Involving publics in biobank governance: moving beyond existing approaches Kathryn G. Hunter Hunter, Kathryn G. Graeme T. Laurie Laurie, Graeme T. 151

8 Genetic information and public opinion Andrew Edgar Edgar, Andrew 178

9 Harmonisation and standardisation in ethics and governance: conceptual and practical challenges Ruth Chadwick Chadwick, Ruth Heather Strange Strange, Heather 201

Bibliography 214

Index 229

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