04.30.2008
Comparative Biobank Governance: Challenges, Strategies, Transformations

About the Book

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.

Table of Contents

Part 1: Conceptualising biobanks 1. Biobanks and governance: an introduction 2. Biobanks in action: new strategies in the governance of life Part 2: How to build a biobank: comparing different approaches 3. The rise and fall of a biobank: the case of Iceland 4. Estonia: ups and downs of a biobank project 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 6. ‘This is not a national biobank…’: the politics of local biobanks in Germany 7. Governing DNA: prospects and problems in the proposed large United States population cohort 8. Governance by stealth: large-scale pharmacogenomics and biobanking in Japan Part 3: Biobanks, publics, and citizenship 9. UK Biobank: bioethics as a technology of governance 10. Biobanks and the biopolitics of inclusion and representation 11. The informed consenters: governing biobanks in Scandinavia 12. Framing consent: the politics of ‘engagement’ in an Australian biobank project 13. Governing through biobanks: Research populations in Israel

About the Author(s)

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.