The Ethics and Governance of Human Genetic Databases
European Perspectives

In this book, first published in 2007, bioethics scholars examine the ethical, legal and social questions raised by human genetic databases.

Matti Häyry (Author), Ruth Chadwick (Author), Vilhjálmur Árnason (Author), Gardar Árnason (Author)

9780521856621, Cambridge University Press

Hardback, published 19 April 2007

296 pages
23.5 x 16 x 2.5 cm, 0.604 kg

'… a useful resource …' European Law Journal

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.

Subject Areas: Medicolegal issues [MBQ], Medical & healthcare law [LNTM]