Book contents
- Law and Legacy in Medical Jurisprudence
- Law and Legacy in Medical Jurisprudence
- Copyright page
- Contents
- Contributors
- Foreword
- Preface
- Table of Cases
- Table of Legislation
- Abbreviations
- Introduction
- 1 ‘Doing’ Medical Law and Ethics
- 2 A Philosopher Looks at ‘Law and Medical Ethics’
- 3 Thinking Outside the Box
- 4 The Public Interest in Health Research
- 5 Taking the Legacy Forward
- 6 On the Importance of Impact on Policy and Legacy
- 7 Breathing Life into Law
- 8 Biomedical Research Policy
- 9 The Burden of History
- 10 Body Parts and Baleful Stars?
- 11 The Legacy of the Warnock Report
- 12 ‘Only Time Will Tell’
- 13 Integrating the Biological and the Technological
- 14 UK Biobank and the Legal Regulation of Genetic Research
- 15 Overcoming Regulatory Impasse in Stem Cell Research and Advanced Therapy Medicines in Argentina through Shared Norms and Values
- 16 Institutions, Interpretive Communities and Legacy in Decision-Making
- 17 Towards a New Privacy
- 18 A Tale of Two Legacies
- Afterword
- Index
17 - Towards a New Privacy
Informed Consent as an Encumbrance to Group Interests
Published online by Cambridge University Press: 23 December 2021
- Law and Legacy in Medical Jurisprudence
- Law and Legacy in Medical Jurisprudence
- Copyright page
- Contents
- Contributors
- Foreword
- Preface
- Table of Cases
- Table of Legislation
- Abbreviations
- Introduction
- 1 ‘Doing’ Medical Law and Ethics
- 2 A Philosopher Looks at ‘Law and Medical Ethics’
- 3 Thinking Outside the Box
- 4 The Public Interest in Health Research
- 5 Taking the Legacy Forward
- 6 On the Importance of Impact on Policy and Legacy
- 7 Breathing Life into Law
- 8 Biomedical Research Policy
- 9 The Burden of History
- 10 Body Parts and Baleful Stars?
- 11 The Legacy of the Warnock Report
- 12 ‘Only Time Will Tell’
- 13 Integrating the Biological and the Technological
- 14 UK Biobank and the Legal Regulation of Genetic Research
- 15 Overcoming Regulatory Impasse in Stem Cell Research and Advanced Therapy Medicines in Argentina through Shared Norms and Values
- 16 Institutions, Interpretive Communities and Legacy in Decision-Making
- 17 Towards a New Privacy
- 18 A Tale of Two Legacies
- Afterword
- Index
Summary
This chapter considers the legacy of respect for individual autonomy and ‘informed consent’ in health research. The primacy of informed consent as a safeguard has led to a systemic regulatory tendency to conceive of and protect privacy as an individual rather than a collective concern. This has limited any regulatory ability to grasp broader social concerns with the use and disclosure of data gathered and generated by health research. Any systemic failure to recognise collective interests in data, and the public interest in (non-personal) data protection, has profound implications for an information age. The chapter reflects on the value of re-negotiating the interests and expectations protected by health research regulation. It recognises the significance of Graeme Laurie’s preferred conception of privacy to enabling such negotiation, and the value of stewardship in establishing normative expectations free of historical encumbrance. Laurie’s conceptualisation of ‘privacy as separateness’, when placed alongside the idea of stewardship, may allow us to rebalance respect to encompass collective interests as fundamental to self-determination and mutual respect.
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- Chapter
- Information
- Law and Legacy in Medical JurisprudenceEssays in Honour of Graeme Laurie, pp. 367 - 390Publisher: Cambridge University PressPrint publication year: 2022