THE ETHICS AND GOVERNANCE OF HUMAN GENETIC DATABASES: EUROPEAN PERSPECTIVES

• Other Authors: H�yry, Matti, Chadwick, Ruth, ?rnason, Vilhj�lmur, ?rnazon, Gardar
• Language: English
• Published: 2007
• Subjects: Databases; Ethics; Genetic Databases; Social Control of Science and Technology; Confidentiality; Genetics; Molecular Biology and Microbiology; Genetics and Human Ancestry; Informed Consent or Human Experimentation; International and Political Dimensions of Biology and Medicine; Information Science Ethics; Chadwick; Lotta; Nordal; Iceland
• Online Access: http://hdl.handle.net/10822/548236

List of contributors -- 1. Introduction: some lessons of ELSAGEN / Vilhjálmur Árnason -- Pt. I. Background -- 2. On human genetic databases / Gardar Árnason -- 3. American principles, European values and the mezzanine rules of ethical genetic databanking / Matti Häyry and Tuija Takala -- 4. The languages of privacy / Salvör Nordal -- Pt. II. Social concerns -- 5. A sociological perspective: public perceptions of privacy and their trust in institutions managing and regulating genetic databases / Kjell E. Eriksson, Margrét Lilja Gundmundsdóttir, Külliki Korts and Sue Weldon -- 6. Estonia / Külliki Korts -- 7. Iceland / Margrét Lilja Gudmundsdóttir and Salvör Nordal -- 8. Sweden / Kjell E. Eriksson -- 9. United Kingdom / Sue Weldon -- 10. Public discourses on human genetic databases / Piia Tammpuu -- Pt. III. Legal issues -- 11. Regulating human genetic databases in Europe / Jane Kaye -- 12. Consent and population genetic databases: a comparative analysis of the law in Iceland, Sweden, Estonia and the UK / Hördur Helgi Helgason -- 13. Third parties' interests in population genetic databases: some comparative notes regarding the law in Estonia, Iceland, Sweden and the UK / Lotta Wendel -- 14. Transforming principles of biolaw into national legislation: comparison of four national laws in three aspects / Ants Nõmper -- 15. Governance of population genetic databases: a comparative analysis of legal regulation in Estonia, Iceland, Sweden and the UK / Susan M.C. Gibbons -- 16. The legal jigsaw governing population genetic databases: concluding remarks on the ELSAGEN legal findings / Jane Kaye -- Pt. IV. Ethical questions -- 17. Introduction: ethical questions / Vilhjálmur Árnason -- 18. Pursuing equality: questions of social justice and population genomics / Sarah Wilson and Ruth Chadwick -- 19. Benefit-sharing and biobanks / Kadri Simm -- 20. Genetic discrimination / Lena Halldenius -- 21. Privacy / Salvör Nordal -- 22. Trust / Margit Sutrop -- 23. Informed consent and human genetic database research / Sigurdur ...