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In this book, first published in 2007, bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.
List of contents
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.
About the author
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.
Summary
Human genetic databases raise many ethical, legal and social questions. In this book, first published in 2007, bioethics scholars examine whether existing ethical frameworks and social policies adequately reflect people's concerns, and how these frameworks and policies may need to change in light of new scientific and technological developments.
