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The Public Interest, Public Goods, and Third-Party Access to UK Biobank

The Public Interest, Public Goods, and Third-Party Access to UK Biobank In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on Concepts of Public Good and Pubic Interest in Access Policies. This study considered the Biobanks role as a public good in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. My argument develops UK Biobanks function as a public good and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demandsif properly justified in terms of a public interestwill be damaging to, rather than protective of, participants rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency, such as a serious criminal investigation or disaster response, in terms of an ethical access policy. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Public Health Ethics Oxford University Press

The Public Interest, Public Goods, and Third-Party Access to UK Biobank

Capps, Benjamin
Public Health Ethics , Volume 5 (3) – Nov 18, 2012
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References (41)

Publisher
Oxford University Press
Copyright
The Author 2012. Published by Oxford University Press. Available online at www.phe.oxfordjournals.org
ISSN
1754-9973
eISSN
1754-9981
DOI
10.1093/phe/phs017
Publisher site
See Article on Publisher Site

Abstract

In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on Concepts of Public Good and Pubic Interest in Access Policies. This study considered the Biobanks role as a public good in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. My argument develops UK Biobanks function as a public good and in terms of its responsibilities as a public health institution; both to protect the rights of the participants and in having a role in reinforcing public goals. Although these two tasks may conflict, it is possible that resolute opposition to some third-party access demandsif properly justified in terms of a public interestwill be damaging to, rather than protective of, participants rights. To illustrate my argument, I consider the appropriate response to an extraordinary public emergency, such as a serious criminal investigation or disaster response, in terms of an ethical access policy.

Journal

Public Health Ethics – Oxford University Press

Published: Nov 18, 2012

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