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Vol 22 No 4 April/May 2017

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Whistleblowing: Law and Practice

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The Governance of Genetic Information: Who Decides?

Edited by: Heather Widdows, Caroline Mullen

ISBN13: 9780521509916
Published: September 2009
Publisher: Cambridge University Press
Country of Publication: UK
Format: Hardback
Price: £77.00
Paperback edition , ISBN13 9781107625426

Low stock.

This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity.

Thus the decisions that are made in the next few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to ‘Who Decides?’ in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere.

  • Contributes to the discussion surrounding the regulation of genetic information, a subject which affects health, welfare and identity
  • Bases discussion of practice on accounts of fundamental theoretical issues, an original approach to the topic
  • Provides a multi-disciplinary account of the subject, taking in law, philosophy, applied ethics and social science

Medical Law
Introduction Heather Widdows and Caroline Mullen

Section I. Problematising Governance of Genetic Information:
1. The medium and the message: tissue samples, genetic information and data protection legislation Neil C. Manson
2. Me, myself, I: against narcissism in the governance of genetic information Søren Holm
3. Decisions, consent and expectations of the individual Caroline Mullen

Section II. Ethical Frameworks of Governance:
4. Constructing communal models of governance: collectives of individuals or distinct ethical loci? Heather Widdows
5. Rights, responsibility and stewardship: beyond consent Roger Brownsword
6. Who decides what? Relational ethics, genetics and well-being Sarah Wilson

Section III. Redesigning Governance:
7. Involving publics in biobank governance: moving beyond existing approaches Kathryn G. Hunter and Graeme T. Laurie
8. Genetic information and public opinion Andrew Edgar
9. Harmonisation and standardisation in ethics and governance: Conceptual and practical challenges Ruth Chadwick and Heather Strange.

Series: Cambridge Law, Medicine & Ethics

The Politics of Blood: Ethics, Innovation and the Regulation of Risk ISBN 9781107474796
Published November 2014
Cambridge University Press
Autonomy, Informed Consent and Medical Law: A Relational Challenge ISBN 9781107625419
Published December 2013
Cambridge University Press
The Governance of Genetic Information: Who Decides? ISBN 9781107625426
Published December 2013
Cambridge University Press
Ethical Problems and Genetics Practice ISBN 9781107697799
Published September 2013
Cambridge University Press
The Politics of Blood: Ethics, Innovation and the Regulation of Risk ISBN 9780521193184
Published May 2012
Cambridge University Press
Ethical Problems and Genetics Practice ISBN 9781107020801
Published April 2012
Cambridge University Press
Genetic Data and the Law: A Critical Perspective on Privacy Protection ISBN 9781107007116
Published March 2012
Cambridge University Press
Xenotransplantation and Risk: Regulating a Developing Biotechnology ISBN 9780521195768
Published November 2011
Cambridge University Press
Organ Shortage: Ethics, Law and Pragmatism ISBN 9780521198998
Published March 2011
Cambridge University Press
Posthumous Interests: Legal and Ethical Perspectives ISBN 9780521187664
Published February 2011
Cambridge University Press
Rationality and the Genetic Challenge: Making People Better?
Edited by: Matti Hayry
ISBN 9780521757133
Published February 2010
Cambridge University Press
Human Tissue in Transplantation and Research: A Model Legal and Ethical Donation Framework ISBN 9780521709545
Published December 2009
Cambridge University Press
Autonomy, Informed Consent and Medical Law: A Relational Challenge ISBN 9780521896931
Published January 2009
Cambridge University Press
Genes and Insurance: Ethical, Legal and Economic Issues Updated ed
Marcus RadetzkiStockholms Universitet, Marian RadetzkiStockholms Universitet, Niklas JuthGoteborgs Universitet, Sweden
ISBN 9780521054508
Published June 2008
Cambridge University Press
Law, Legitimacy and the Rationing of Health Care: A Contextual and Comparative Perspective ISBN 9780521674454
Published November 2007
Cambridge University Press
The Troubled Pregnancy: Legal Wrongs and Rights in Reproduction ISBN 9780521616249
Published June 2007
Cambridge University Press
Property in the Body: Feminist Perspectives ISBN 9780521687324
Published April 2007
Cambridge University Press