Skip to main content Accessibility help
×
Hostname: page-component-76fb5796d-2lccl Total loading time: 0 Render date: 2024-04-25T10:27:35.647Z Has data issue: false hasContentIssue false

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
Get access

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Save book to Kindle

To save this book to your Kindle, first ensure coreplatform@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×