Ethics And Governance Of Human Genetic Databases: European P

Description:
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.

Review:
'Rarely does a book comprise so many large and growing legal questions. The Ethics and Governance of Human Databases is a very worthy book which addresses issues that are opening up every day - sometimes under our feet.' Law and Politics Book Review 'The book presents a truly interdisciplinary investigation containing, as it does, input from disciplines of philosophy, law and sociology. The authors are amongst the most recognised in the research field and the book benefits, as does the reader, from their collective knowledge expertise. ...This book provides a comprehensive account of the key issues at stake with regards to the ethics and governance of HGD's. ... A major strength of the book is that it reflects on actual or proposed HGD initiatives, providing a 'real life' dimension to most of the discussion. ... It is a welcome addition to the HGD literature.' SCRIPT-ed 'The book is a very rich source to learn more about sociological, legal and ethical issues concerning the HGDs in the four countries. ... Wherever the future of HDGs lies, the book is an authentic contribution for the struggle to find adequate legal, ethical and socio-political solutions in Europe.' Medicine, Health Care and Philosophy: A European Journal '... a useful resource ...' European Law Journal

Table of Contents:
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.

Author Biography:
Matti Hayry is Professor of Bioethics and Philosophy of Law at the University of Manchester. Ruth Chadwick is Distinguished Research Professor at Cardiff University. Vilhjalmur Arnason is a Professor of Philosophy and Chair of the Centre for Ethics at the University of Iceland. Dr Gardar Arnason is a Lecturer in Professional Ethics at the University of Central Lancashire.