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, 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 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 Hayry and Tuija Takala; 3. Languages of privacy Salvor 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, Kulliki Korts, Sue Weldon; 5. Estonia Kulliki Korts; 6. Iceland Margret Lilja Gudmundsdottir and Salvor 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 Hordur 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 Salvor 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 Hayry and Tuija Takala.