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
14 - UK Biobank and the Legal Regulation of Genetic Research
Preserving the Legacy and Empowering Future Regulation
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
UK Biobank, the huge genetic database funded by Wellcome and the Medical Research Council, operates within its ethical framework, created in 2003 and subsequently taken forward by the UK Biobank Ethics and Governance Council (EGC). This approach of having an ethical framework for a distinct research initiative interpreted by a body with the ability to hold the researchers and funders to account can be seen as innovative but also a legacy of the era of multiple organ retention scandals and concerns over the potential implications of using genetic material and data in human genome sequencing. Graeme Laurie played a critical part in developing and implementing that framework, including as Chair of the EGC, which was replaced by the Ethics Advisory Committee in 2018. This chapter explores how the legacy of the scandals, controversies and legal uncertainties over regulation of tissue and data formed the backdrop to the creation of the UK Biobank EGC. It examines the EGC’s work, its responsive approach to regulation, its ultimate dissolution and what lessons can be learnt.
- Type
- Chapter
- Information
- Law and Legacy in Medical JurisprudenceEssays in Honour of Graeme Laurie, pp. 307 - 331Publisher: Cambridge University PressPrint publication year: 2022