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.

chapter |18 pages


Public participation in genetic databases
ByRichard Tutton, Oonagh Corrigan

chapter |20 pages

Person, property and gift

Exploring languages of tissue donation to biomedical research
ByRichard Tutton

chapter |18 pages

Blood donation for genetic research

What can we learn from donors' narratives?
ByHelen Busby

chapter |21 pages

Levels and styles of participation in genetic databases

A case study of the North Cumbria Community Genetics Project
ByErica Haimes, Michael Whong-Barr

chapter |19 pages

Informed consent

The contradictory ethical safeguards in pharmacogenetics
ByOonagh Corrigan

chapter |20 pages

Ambiguous gifts

Public anxiety, informed consent and biobanks
ByKlaus Hoeyer

chapter |22 pages

Abandoning informed consent

The case of genetic research in population collections
ByJane Kaye

chapter |22 pages

Children's participation in genetic epidemiology

Consent and control
ByEmma Williamson, Trudy Goodenough, Julie Kent, Richard Ashcroft

chapter |20 pages

‘Public consent' or ‘scientific citizenship'?

What counts as public participation in population-based DNA collections?
BySue Weldon

chapter |22 pages

Tissue collection and the pharmaceutical industry

Investigating corporate biobanks
ByGraham Lewis