9780415427388

Biobanks: Governance in Comparative Perspective

by ;
  • ISBN13:

    9780415427388

  • ISBN10:

    041542738X

  • Edition: 1st
  • Format: Nonspecific Binding
  • Copyright: 2008-06-20
  • Publisher: Routledge

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Summary

Taking a different approach to biobanks - genetic databases that combine genetic information derived from blood samples with personal data about environment, medical history, lifestyle or genealogy, this book draws attention to their political and governance implications. It argues that for biobanks to be created, shaped, maintained, and to operate properly, a number of interrelated conditions need to exist, from legal environment to funding mechanisms and social acceptance. The book takes a comparative focus, with chapters on biobanks in Iceland, Estonia, Scandinavia, France, US, Japan, UK, Germany, Australia and Israel, and is divided into three parts which: introduce the conceptual framework that underpins the volume focus on biobanks as a challenge for governance emphasize biobanks as a tool and site for governance. This groundbreaking book makes clear that biobanks are a phenomenon that cannot be disconnected from considerations of power, politics, and thereshaping 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

List of contributorsp. vii
Acknowledgementsp. ix
List of abbreviationsp. x
Conceptualizing biobanksp. 1
Biobanks and governance: an introductionp. 3
Biobanks in action: new strategies in the governance of lifep. 22
How to build a biobank: comparing different approachesp. 39
The rise and fall of a biobank: the case of Icelandp. 41
Estonia: ups and downs of a biobank projectp. 56
Patient organizations as the (un)usual suspects: the biobanking activities of the Association Francaise contre les Myopathies and its Genethon DNA and Cell Bankp. 71
'This is not a national biobank...': the politics of local biobanks in Germanyp. 88
Governing DNA: prospects and problems in the proposed large United States population cohortp. 109
Governance by stealth: large-scale pharmacogenomics and biobanking in Japanp. 123
Biobanks, publics, and citizenshipp. 141
UK Biobank: bioethics as a technology of governancep. 143
Biobanks and the biopolitics of inclusion and representationp. 159
The informed consenters: governing biobanks in Scandinaviap. 177
Framing consent: the politics of 'engagement' in an Australian biobank projectp. 194
Governing through biobanks: research populations in Israelp. 210
Indexp. 231
Table of Contents provided by Ingram. All Rights Reserved.

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