Genetic Databases offers a timely analysis of the underlying tensions, contradictions and limitations of the current regulatory frameworks for, and policy debates about, genetic databases. Drawing on original empirical research and theoretical debates in the fields of sociology, anthropology and legal studies, the contributors to this book challenge the prevailing orthodoxy of informed consent and explore the relationship between personal privacy and the public good. They also consider the multiple meanings attached to human tissue and the role of public consultations and commercial involvement in the creation and use of genetic databases.
The authors argue that policy and regulatory frameworks produce a representation of participation that is often at odds with the experiences and understandings of those taking part. The findings present a serious challenge for public policy to provide mechanisms to safeguard the welfare of individuals participating in genetic databases.
1. Introduction: Public Participation in Genetic Databases 2. Persons, Property and Gift: Exploring Languages of Tissue Donation to Biomedical Research 3. Blood Donation for Genetic Research: What Can we Learn From Donor's Narratives? 4. Levels and Styles of Participation in Genetic Databases: A Case Study of the North Cumbria Community Genetics Project 5. Informed Consent: The Contradictory Ethical Safeguards in Pharmacogenetics 6. Ambiguous Gifts: Public Anxiety, Informed Consent and Biobanks 7. Abandoning Informed Consent - The Case of Genetic Research in Population Collections 8. Children's Participation in Genetic Epidemiology: Consent and Control 9. 'Public Consent' or 'Scientific Citizenship'? What Counts as Public Participation in Population Based DNA Collections? 10. Tissue Collection and the Pharmaceutical Industry: Investigating Corporate Biobanks