A solidarity-based approach to the governance of research biobanks
Prainsack B, Buyx A (2013)
Publication Type: Journal article
Publication year: 2013
Journal
Book Volume: 21
Pages Range: 71-91
Journal Issue: 1
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. © The Author [2013]. Published by Oxford University Press; all rights reserved.
Involved external institutions
United Kingdom (GB)How to cite
APA:
Prainsack, B., & Buyx, A. (2013). A solidarity-based approach to the governance of research biobanks. Medical Law Review, 21(1), 71-91. https://dx.doi.org/10.1093/medlaw/fws040
MLA:
Prainsack, Barbara, and Alena Buyx. "A solidarity-based approach to the governance of research biobanks." Medical Law Review 21.1 (2013): 71-91.
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