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The Ethics and Governance of Human Genetic Databases
European Perspectives

$34.00 ( ) USD

Part of Cambridge Law, Medicine and Ethics

Vilhjálmur Árnason, Gardar Árnason, Matti Häyry, Tuija Takala, Salvör Nordal, Kjell E. Eriksson, Margrét L. Gudmundsdóttir, Külliki Korts, Sue Weldon, Piia Tammpuu, Jane Kaye, Hördur Helgi Helgason, Lotta Wendel, Ants Nõmper, Susan M. C. Gibbons, Vilhjálmur Árnason, Sarah Wilson, Ruth Chadwick, Kadri Simm, Lena Halldenius, Margit Sutrop, Sigurdur Kristinsson, Mark Cutter, Rainer Kattel
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  • Date Published: June 2007
  • availability: This ISBN is for an eBook version which is distributed on our behalf by a third party.
  • format: Adobe eBook Reader
  • isbn: 9780511282584

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About the Authors
  • 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.

    • Provides the reader with new information and analysis
    • Involves a range of disciplines and national perspectives
    • Deals with cutting-edge issues affecting the future of health care
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    Reviews & endorsements

    "...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 everyday - sometimes under our feet."
    --Ricardo Chueca, Department of Law, University of La Rioja, Spain, The Law and Politics Book Review

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    Product details

    • Date Published: June 2007
    • format: Adobe eBook Reader
    • isbn: 9780511282584
    • availability: This ISBN is for an eBook version which is distributed on our behalf by a third party.
  • Table 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.

  • Authors

    Matti Häyry, University of Manchester
    Matti Häyry is Professor of Bioethics and Philosophy of Law at the University of Manchester.

    Ruth Chadwick
    Ruth Chadwick is Distinguished Research Professor at Cardiff University.

    Vilhjálmur Árnason, University of Iceland, Reykjavik
    Vilhjálmur Árnason is a Professor of Philosophy and Chair of the Centre for Ethics at the University of Iceland.

    Gardar Árnason, University of Central Lancashire, Preston
    Dr Gardar Árnason is a Lecturer in Professional Ethics at the University of Central Lancashire.

    Contributors

    Vilhjálmur Árnason, Gardar Árnason, Matti Häyry, Tuija Takala, Salvör Nordal, Kjell E. Eriksson, Margrét L. Gudmundsdóttir, Külliki Korts, Sue Weldon, Piia Tammpuu, Jane Kaye, Hördur Helgi Helgason, Lotta Wendel, Ants Nõmper, Susan M. C. Gibbons, Vilhjálmur Árnason, Sarah Wilson, Ruth Chadwick, Kadri Simm, Lena Halldenius, Margit Sutrop, Sigurdur Kristinsson, Mark Cutter, Rainer Kattel

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