The Medical Biobank of Umea in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.

This book offers a clear analysis of Foucault's work on scientific knowledge and its relationship to individuals and society. It suggests a way of using Foucault's tools for science criticism and resistance, while avoiding the pitfalls of vulgar relativism or irrational anti-science views. Two cases of scientific conflict are considered. The first considers left-handers as subjects of science, in particular studies which purport to show that left-handers die on average younger than right-handers. The second case considers Icelanders as subjects of science in the context of a partly failed attempt to construct a genetic database encompassing the entire nation.The book will be of interest to bioethicists and philosophers who are concerned with the interaction between science and its human subjects, as well as scholars concerned with Foucault's work on science.

The Medical Biobank of Umea in Sweden, deCODE's Health Sector Database in Iceland, the Estonian Genome Project and the UK Biobank contain health data and genetic data from large populations. Some include genealogical or lifestyle information. They are resources for research in human genetics and medicine, exploring interaction between genes, lifestyle, environmental factors and health and diseases. The collection, storage and use of this data raise ethical, legal and social issues. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies reflect people's concerns, and how they may need to change in light of new scientific and technological developments. The ethical issues of social justice, genetic discrimination, informational privacy, trust in science and consent to participation in database research are analyzed, whilst an empirical survey, conducted in the four countries, demonstrates public views of privacy and related moral values in the context of human genetic databases.