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A Solidarity-Based Approach to the Governance of Research Biobanks

Medical Law Review, Vol. 21(1), p. 71-91, 2013

28 Pages Posted: 8 Sep 2016  

Barbara Prainsack

King's College London

Alena Buyx

University of Kiel - Department of Biomedical Ethics

Date Written: January 16, 2013

Abstract

New opportunities for large-scale data linkage and data-mining have rendered biobanks one of the core resources of medical research in the twenty-first century. At the same time, research biobanking has been seen to pose particular ethical and legal challenges pertaining to, for example, data protection, and the minimisation of other risks for participants. These measures have in turn led to heavy administrative, logistical, and financial costs and attracted criticism for unduly impeding disease research. Based on a newly formulated approach to solidarity, we propose an approach to governance that recognises people’s willingness to participate in a public research biobank, and poses stronger emphasis on harm mitigation. We argue that such a model avoids some of the pitfalls of previous approaches. It also allows moving beyond overly restrictive and burdensome, exclusively autonomy-based governance towards governance that is reflective of people’s willingness to accept costs to assist others.

Keywords: Solidarity, Research Biobanks, Health Governance, Risk

Suggested Citation

Prainsack, Barbara and Buyx, Alena, A Solidarity-Based Approach to the Governance of Research Biobanks (January 16, 2013). Medical Law Review, Vol. 21(1), p. 71-91, 2013. Available at SSRN: https://ssrn.com/abstract=2834563

Barbara Prainsack (Contact Author)

King's College London ( email )

London
United Kingdom

Alena Buyx

University of Kiel - Department of Biomedical Ethics ( email )

zu Kiel Arnold-Heller-Str. 3
Haus 28
Kiel, 24105
Germany

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