Partnership in U.K. Biobank: A Third Way for Genomic Property?

Author:

Winickoff David E.

Abstract

Although scientific and commercial excitement about genomic biobanks has subsided since the biotech bust in 2000, they continue to fascinate life scientists, bioethicists, and politicians alike. Indeed, these assemblages of personal health information, human DNA, and heterogeneous capital have become and remain important events in the ethics and politics of the life sciences. For starters, they continue to reveal and produce the central scientific, technological, and economic paradigms so ascendant in biology today: genome, infotech, and market. Biobanks also illustrate what might be called the new distributive politics of biomedical research. Within those politics, the commodification of persons – or at the very least, of their informational representations – has challenged the ontological, ethical, and political underpinnings of the social contract between researchers and their human research subjects. In brief, biobanks are unsettling relations between genes, tissue, medical records, and persons (both individual and collective). But it is also clear that these relations are increasingly being restructured by new rights of control, access, exclusion, and use known as “property,” both material and intellectual.

Publisher

Cambridge University Press (CUP)

Subject

Health Policy,General Medicine,Issues, ethics and legal aspects

Reference103 articles.

1. 29. The English word “partner” derives from the 12th-century Anglo-Normon parcener, meaning parsoner, participant, part-owner or coheir. Oxford English Dictionary, 3rd ed.

2. 19. Notes from the Bill state that the idea for the database initiated with deCODE and Kari Stefansson, and the company reportedly drafted the first version of the Bill around December 1997. See Rose, , supra note 3.

3. Tackling community concerns about commercialisation and genetic research: A modest interdisciplinary proposal

4. 68. See, e.g., Collins, , supra note 8.

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