Rethinking Informed Consent in Bioethics

by Neil C. Manson , Onora O'Neill

• ISBN13: 9780521697477
• ISBN10: 0521697476
• Edition: 1st
• Format: Paperback
• Copyright: 2007-04-09
• Publisher: Cambridge University Press

Summary

Informed consent is a central topic in contemporary biomedical ethics. Yet attempts to set defensible and feasible standards for consenting have led to persistent difficulties. In Rethinking Informed Consent in Bioethics Neil Manson and Onora O'Neill set debates about informed consent in medicine and research in a fresh light. They show why informed consent cannot be fully specific or fully explicit, and why more specific consent is not always ethically better. They argue that consent needs distinctive communicative transactions, by which other obligations, prohibitions, and rights can be waived or set aside in controlled and specific ways. Their book offers a coherent, wide-ranging and practical account of the role of consent in biomedicine which will be valuable to readers working in a range of areas in bioethics, medicine and law.

Table of Contents

Preface	p. vii
Acknowledgements	p. xii
Consent: Nuremberg, Helsinki and beyond	p. 1
Introduction	p. 1
Beginning at Nuremberg	p. 2
Extending scope: from research ethics to clinical ethics	p. 4
Raising standards: explicit and specific consent	p. 6
Improving justifications: the quest for autonomy	p. 16
Regulatory reinforcement: consent requirements	p. 22
Conclusion	p. 24
Information and communication: the drift from agency	p. 26
Framing informed consent	p. 27
Two layers of distortion	p. 34
Information and the drift from agency	p. 34
What the conduit and container metaphors hide	p. 38
Conclusion	p. 48
Informing and communicating: back to agency	p. 50
Agency	p. 50
Communicative actions	p. 54
Communicative norms	p. 57
Two 'models' of information and communication	p. 64
How to rethink informed consent	p. 68
Introduction: two models of informed consent	p. 68
Why consent transactions matter: beyond autonomy	p. 69
Justifying consent transactions: consent as waiver	p. 72
Scope and standards	p. 77
Consent transactions: standards for communication	p. 84
Consent transactions: commitments	p. 90
Conclusion: consent in practice	p. 94
Informational privacy and data protection	p. 97
Informational privacy	p. 100
Informational rights and obligations	p. 101
Informational privacy as a right over content	p. 105
Data protection legislation: second-order informational obligations	p. 111
Rethinking informational privacy	p. 121
Confidentiality: regulating communicative action rather than information content	p. 123
Conclusion	p. 128
Genetic information and genetic exceptionalism	p. 130
Questions about genetic information	p. 131
Genetic privacy and genetic exceptionalism	p. 133
Is Genetic information contained within DNA?	p. 145
Conclusion	p. 149
Trust, accountability and transparency	p. 154
Consent, paternalism and trust	p. 154
Placing and refusing trust intelligently	p. 159
Accountability, and trustworthiness	p. 167
Accountability, trustworthiness and trust in biomedicine	p. 169
Accountability with transparency	p. 177
The structure of accountability	p. 181
Some conclusions and proposals	p. 183
Informed consent and epistemic norms	p. 184
Informed consent and individual autonomy	p. 185
Informed consent as waiver	p. 187
Practices and policies for informed consent	p. 189
After rethinking: the possibility of change	p. 198
Bibliography	p. 201
Institutional sources and documents	p. 207
Index	p. 211
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