The Emergence of Biobanks in the Legal Landscape: Towards a New Model of Governance

18 Pages Posted: 22 Feb 2012

See all articles by Emmanuelle Rial‐Sebbag

Emmanuelle Rial‐Sebbag

Inserm, UMR 1027

Anne Cambon‐Thomsen

University of Angers - French Institute of Health and Medical Research (INSERM)

Date Written: March 2012

Abstract

Biobanks are increasingly seen as new tools for medical research. Their main purpose is to collect, store, and distribute human body materials. These activities are regulated by legal instruments which are heterogeneous in source (national and international), and in form (binding and non‐binding). We analyse these to underline the need for a new model of governance for modern biobanks. The protection initially ensured by respect for fundamental rights will need to focus on more interactions with society in order to ensure biobanks' sustainability. International regulation is more oriented on ethical principles and traces the limits of the uses of genetics, while European regulation is more concerned with the protection of fundamental rights and the elaboration of standards for biobanks' quality assurance. But is this protection adequate and sufficient? Do we need to move from the biomedical research analogy to new forms of legal protection, and governance systems which involve citizens?

Suggested Citation

Rial‐Sebbag, Emmanuelle and Cambon-Thomsen, Anne, The Emergence of Biobanks in the Legal Landscape: Towards a New Model of Governance (March 2012). Journal of Law and Society, Vol. 39, Issue 1, pp. 113-130, 2012, Available at SSRN: https://ssrn.com/abstract=2009203 or http://dx.doi.org/10.1111/j.1467-6478.2012.00573.x

Emmanuelle Rial‐Sebbag (Contact Author)

Inserm, UMR 1027

Toulouse
France

Anne Cambon-Thomsen

University of Angers - French Institute of Health and Medical Research (INSERM) ( email )

101 rue de Tolbiac
75654 Paris Cedex 13
France

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