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