The Ethics and Governance of Human Genetic Databases European Perspectives Cambridge Law, Medicine and Ethics Series

The Medical Biobank of Umeå 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.

Introduction Vilhjálmur Árnason; Part I. Background: 1. On human genetic databases Gardar Árnason; 2. American principles, European values, and the mezzanine rules of ethical genetic data banking Matti Häyry and Tuija Takala; 3. Languages of privacy Salvör Nordal; Part II. Social Concerns: 4. A sociological perspective: public perceptions of privacy and their trust in institutions managing and regulating genetic databases Kjell E. Eriksson, Margrét L. Gudmundsdóttir, Külliki Korts and Sue Weldon; 5. Estonia Külliki Korts; 6. Iceland Margrét Lilja Gudmundsdóttir and Salvör Nordal; 7. Sweden Kjell E. Eriksson; 8. United Kingdom Sue Weldon; 9. Public discourses on human genetic databases Piia Tammpuu; Part III. Legal Issues: 10. Regulating human genetic databases in Europe Jane Kaye; 11. Consent and population genetic databases Hördur Helgi Helgason; 12. Third party's interests in population genetic databases Lotta Wendel; 13. Transforming principles of biolaw into national legislation Ants Nõmper; 14. Governance of population genetic databases Susan M. C. Gibbons; 15. The legal jigsaw governing population genetic databases Jane Kaye; Part IV. Ethical Questions: 16. Introduction Vilhjálmur Árnason; 17. Pursuing equality: questions of social justice and population genomics Sarah Wilson and Ruth Chadwick; 18. Benefit-sharing and biobanks Kadri Simm; 19. Genetic discrimination Lena Halldenius; 20. Privacy Salvör Nordal; 21. Trust Margit Sutrop; 22. Consent Sigurdur Kristinsson and Vilhjálmur Árnason; Part V. Political Considerations: 23. Impact of biobanks on ethical frameworks Ruth Chadwick and Mark Cutter; 24. Genetics, rhetoric and policy Gardar Árnason; 25. Genetic databases and governance Rainer Kattel; 26. Conclusion: bioethical analysis of the results Matti Häyry and Tuija Takala.

Matti Häyry is Professor of Bioethics and Philosophy of Law at the University of Manchester.
Ruth Chadwick is Distinguished Research Professor at Cardiff University.
Vilhjálmur Árnason is a Professor of Philosophy and Chair of the Centre for Ethics at the University of Iceland.
Dr Gardar Árnason is a Lecturer in Professional Ethics at the University of Central Lancashire.