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Title: The legal structure of UK Biobank : private law for public goods?
Author: Bell, Jessica
ISNI:       0000 0004 5918 6743
Awarding Body: University of Sheffield
Current Institution: University of Sheffield
Date of Award: 2016
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Population biobanks hold promise for improving the health of future generations by providing researchers with a resource of both human samples and data to investigate the linkages between genes, lifestyle and environment in population health. Widespread concern has been expressed in academic and policy literature as to the ongoing ethical, legal and social challenges that are raised by population biobanks, by virtue of their longitudinal nature and broadly set research aims. To address these challenges, and to balance private interests of the individuals who donate to biobanks, with the public benefit that is believed to derive from the establishment of biobanks, some countries have specifically legislated to establish national biobanks. Alternatively, UK Biobank has been incorporated as a charitable corporation. Potentially, this private legal structure diminishes the public accountability of the project, as well as the protection of donors from personal harm. This thesis analyses the multi-layered nexus of laws within which UK Biobank is embedded and shows the tensions that are associated with using a private legal structure to secure public objectives. UK Biobank is in unchartered legal territory on a number of levels, and this thesis posits UK Biobank as a timely example of a large-scale organisation whose model straddles the public/private divide in law and invites an eclectic mix of corporate, public, charity, contract and tort lawyers into a conversation with ethicists, scientists, policy experts and the public to consider how to effectively progress population health via biobanking. As such, the experience of UK Biobank raises questions as to how best to balance public and private interests in large-scale, public mission organisations in general.
Supervisor: Plomer, Aurora ; Kirkham, Richard Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available