ABSTRACT
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|38 pages
Conceptualizing biobanks
part 2|102 pages
How to build a biobank: comparing different approaches
chapter 5|17 pages
Patient organizations as the (un)usual suspects
chapter 6|21 pages
‘This is not a national biobank . . .'
chapter 7|14 pages
Governing DNA
part 3|90 pages
Biobanks, publics and citizenship