Genetic Databases (PDF)

Over the past few years there has been a proliferation of genetic databases and biobanks, which promise to increase scientists' understandings of the way our genes interact with the environment. These biomedical research projects involve hundreds of thousands of people worldwide who are asked to donate blood and tissue samples as well as personal information. The control, exploitation and ownership of such detailed personal medical information by governments and by commercial companies is generating social and ethical controversy.

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.

The book is written in an accessible style that will appeal to a multidisciplinary and international audience, and is relevant to policy discussions in Europe and in North America, as well as other countries that are developing similar initiatives. It will be of great interest to academics and students of medical sociology, health studies, public health, public policy and ethics.