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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

Edward S. Dove
Affiliation:
University of Edinburgh
Niamh Nic Shuibhne
Affiliation:
University of Edinburgh
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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.

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Law and Legacy in Medical Jurisprudence
Essays in Honour of Graeme Laurie
, pp. 307 - 331
Publisher: Cambridge University Press
Print publication year: 2022

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