Title: Being a member of the club: the transnational (self-)governance of networks of biobanks

Authors: Michaela Th. Mayrhofer, Barbara Prainsack

Addresses: Department of Political Science, University of Vienna, Universitatsstrasse 7-2, 1010 Vienna, Austria. ' King's College London, Centre for Biomedicine & Society (CBAS), The Strand, London WC2R 2LS, UK

Abstract: Biobanks have become one of the core resources for biomedical research. At the same time, a number of risks associated with processing and storing of biological material and corresponding data have been diagnosed. This paper focuses on how institutionalised transnational networks of biobanks generate practical answers to some of these risks. Drawing upon three case studies – GenomEUtwin, EuroBioBank and P3G – we illustrate how soft law (such as guidelines and best practice protocols) emerges as a by-product of the standardising activities undertaken to enable and facilitate transnational research collaboration – which in times of genome-wide association studies has become as important as never before. As our case studies show, the creation of ethical standards, as well as adherence to them, in the context of networks of biobanks is neither imposed on the scientific communities, nor is it separable from the very core of scientific research; instead, ethics and science are literally co-produced.

Keywords: biobanks; genomics; transnational collaboration; ethics; governance; biomedical research; risk assessment; transnational networks; biobank networks; guidelines; best practice; standardisation; ethical standards.

DOI: 10.1504/IJRAM.2009.024130

International Journal of Risk Assessment and Management, 2009 Vol.12 No.1, pp.64 - 81

Published online: 26 Mar 2009 *

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