Biobanks: Governance in Comparative Perspective

Book Cover......Page 1
Title......Page 4
Copyright......Page 5
Contents......Page 6
List of Contributors......Page 8
Acknowledgements......Page 10
Abbreviations......Page 11
Part 1 Conceptualizing biobanks 5111......Page 14
1 Biobanks and governance: An introduction......Page 16
2 Biobanks in action: New strategies in the governance of life......Page 35
Part 2 How to build a biobank: comparing different approaches 5111 1011......Page 52
3 The rise and fall of a biobank: The case of Iceland......Page 54
4 Estonia: Ups and downs of a biobank project......Page 69
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......Page 84
6 ‘This is not a national biobank . . .’: The politics of local biobanks in Germany......Page 101
7 Governing DNA: Prospects and problems in the proposed large-scale United States population cohort study......Page 122
8 Governance by stealth: Large-scale pharmacogenomics and biobanking in Japan......Page 136
Part 3 Biobanks, publics and citizenship 5111......Page 154
9 UK Biobank: Bioethics as a technology of governance......Page 156
10 Biobanks and the biopolitics of inclusion and representation 1111 5111......Page 172
11 The informed consenters: Governing biobanks in Scandinavia......Page 190
12 Framing consent: The politics of ‘engagement’ in an Australian biobank project......Page 207
13 Governing through biobanks: Research populations in Israel......Page 223
Index......Page 244