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Vol 21 No 11 Nov/Dec 2016

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The Ethics and Governance of Human Genetic Databases: European Perspectives


ISBN13: 9781107652576
Published: October 2013
Publisher: Cambridge University Press
Country of Publication: UK
Format: Paperback (Hardback in 2007)
Price: £25.99
Hardback edition , ISBN13 9780521856621



Despatched in 7 to 9 days.

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.

  • 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

Subjects:
Medical Law
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.

Series: Biomedical Law & Ethics Library

Revisiting Landmark Cases in Medical Law ISBN 9781138808331
To be published June 2017
Routledge
£90.00
Bioethics: Methods, Theories, Domains ISBN 9781138789937
Published April 2014
Routledge
£26.95
Medical Ethics in China: A Transcultural Interpretation ISBN 9780415724562
Published September 2013
Routledge
£26.95
The Connected Self: The Ethics and Governance of the Genetic Individual ISBN 9781107008601
Published January 2013
Cambridge University Press
£64.99
£22.46 + £4.49 VAT
(ePub)
Buy
£31.99
Medical Ethics in China: A Transcultural Interpretation ISBN 9780415689496
Published December 2011
Routledge
£90.00
Bioethics: Methods, Theories, Domains ISBN 9780415609913
Published October 2011
Routledge
£95.00
Bioethics: Methods, Theories, Domains (eBook) ISBN 9781136190070
Published October 2011
Routledge
£22.46 + £4.49 VAT
(ePub)
Buy
Healthcare Research Ethics and Law: Regulation, Review and Responsibility ISBN 9780415429177
Published October 2009
Routledge-Cavendish
£35.99
The Body in Bioethics ISBN 9781844720569
Published April 2009
Routledge-Cavendish
£35.99
Medicine, Malpractice and Misapprehensions ISBN 9780415428095
Published December 2007
Routledge-Cavendish
£35.99
Values in Medicine: What are we Really Doing to Patients? ISBN 9780415424691
Published December 2007
Routledge-Cavendish
£35.99
Values in Medicine: What are we Really Doing to Patients? ISBN 9780415424684
Published December 2007
Routledge-Cavendish
£105.00
Euthanasia, Ethics and the Law: From Conflict to Compromise ISBN 9781844721061
Published November 2007
Routledge-Cavendish
£35.99
Assisted Dying: Reflections on the Need for Law Reform ISBN 9781844720545
Published November 2007
Routledge-Cavendish
£35.99
The Best Interests of the Child in Healthcare ISBN 9781844720422
Published October 2007
UCL Press
£35.99
Bioethics and the Humanities: Attitudes and Perceptions ISBN 9781844720521
Published March 2007
Routledge-Cavendish
£35.99
Impairment and Disability: Law and Ethics at the Beginning and End of Life ISBN 9781844720408
Published February 2007
Routledge-Cavendish
£35.99
The Harm Paradox: Tort Law and the Unwanted Child in an Era of Choice ISBN 9781844721085
Published January 2007
Routledge-Cavendish
£35.99
Human Fertilisation and Embryology: Reproducing Regulation ISBN 9781844720903
Published December 2006
UCL Press
£35.99
Publication Abandoned