The Ethics and Governance of Human Genetic Databases

Introduction Vilhjalmur Arnason; Part I. Background: 1. On human genetic databases Gardar Arnason; 2. American principles, European values, and the mezzanine rules of ethical genetic data banking Matti Haeyry and Tuija Takala; 3. Languages of privacy Salvoer 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, Margret L. Gudmundsdottir, Kuelliki Korts and Sue Weldon; 5. Estonia Kuelliki Korts; 6. Iceland Margret Lilja Gudmundsdottir and Salvoer 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 Hoerdur Helgi Helgason; 12. Third party's interests in population genetic databases Lotta Wendel; 13. Transforming principles of biolaw into national legislation Ants Nomper; 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 Vilhjalmur Arnason; 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 Salvoer Nordal; 21. Trust Margit Sutrop; 22. Consent Sigurdur Kristinsson and Vilhjalmur Arnason; Part V. Political Considerations: 23. Impact of biobanks on ethical frameworks Ruth Chadwick and Mark Cutter; 24. Genetics, rhetoric and policy Gardar Arnason; 25. Genetic databases and governance Rainer Kattel; 26. Conclusion: bioethical analysis of the results Matti Haeyry and Tuija Takala.