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Governing the practice of biobanking

Open Panel

Abstract

Collecting human biological material and data is an old practice that has gained new significance in the post-genomic era, especially with the emergence of so-called ‘biobanks’. In many academic debates and legal developments, biobanks are conceptualised as a challenge for governance. In this paper, I analyse the modes of governance of three French biobanks, namely the Genethon DNA and Cell Bank, the Picardy Biobank and the Tumour Bank of the Saint-Louis hospital. I show that the practice of biobanking, formerly a side-activity of clinical or research activities, is today on its way to become a profession of its own right, with its own ethical standards and ways of regulating. While biological material is increasingly seen as a crucial resource for biomedical research, a wide range of issues, such as data protection, related to the practice of biobanking has been diagnosed and discussed. Often, these issues are tackled by soft rules and regulations addressed by both ELSI experts and biobank practitioners rather than a tight set of laws. Methodologically, this research is a comparative three case-study approach grounded in the study of documents (such as best-practice protocols or recommendations), a series of qualitative interviews and on-site observations between 2005-2009.