Biobanks Governance in Comparative Perspective

In recent years, a number of large population-based biobanks – genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy – have been set up in order to study the interface between disease, and genetic and environmental factors. Unsurprisingly, these studies have sparked a good deal of controversy and the ethical and social implications have been widely debated. Biobanks: Governance in Comparative Perspective is the first book to explore the political and governance implications of biobanks in Europe, the United States, Asia, and Australia. This book explores: the interrelated conditions needed for a biobank to be created and to exist the rise of the new bio-economy the redefinition of citizenship accompanying national biobank developments This groundbreaking book makes clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics, and the reshaping of current practices in governance. It will be a valuable read for scholars and students of genetics, bioethics, risk, public health and the sociology of health and illness.

Part 1: Conceptualising biobanks 1. Biobanks and governance: an introduction - Herbert Gottweis and Alan Petersen 2. Biobanks in action: new strategies in the governance of life - Herbert Gottweis Part 2: How to build a biobank: comparing different approaches 3. The rise and fall of a biobank: the case of Iceland - Gísli Pálsson 4. Estonia: ups and downs of a biobank project - Rain Eensaar 5. Patient organizations as the (un)usual suspects: the biobanking activities of the Association Française contre les Myopathies and its Généthon DNA and Cell Bank - Michaela Mayrhofer 6. ‘This is not a national biobank…’: the politics of local biobanks in Germany - Ingrid Schneider 7. Governing DNA: prospects and problems in the proposed large United States population cohort - Amy Fletcher 8. Governance by stealth: large-scale pharmacogenomics and biobanking in Japan - Robert Triendl and Herbert Gottweis Part 3: Biobanks, publics, and citizenship 9. UK Biobank: bioethics as a technology of governance - Oonagh Corrigan and Alan Petersen 10. Biobanks and the biopolitics of inclusion and representation - Richard Tutton 11. The informed consenters: governing biobanks in Scandinavia - Lars Øystein Ursin, Klaus Hoeyer, & John-Arne Skolbekken 12. Framing consent: the politics of ‘engagement’ in an Australian biobank project - Beverley McNamara and Alan Petersen 13. Governing through biobanks: Research populations in Israel - Barbara Prainsack

Herbert Gottweis is Professor in the Department of Political Science at the University of Vienna, Austria. Alan Petersen is Professor of Sociology, School of Political and Social Inquiry, Monash University, Melbourne, Australia.He is also an Honorary Visiting Professor at Plymouth University and at City University in London, UK.