Literature DB >> 15156881

Governing population genomics: law, bioethics, and biopolitics in three case studies.

David E Winickoff1.   

Abstract

Existing scholarship on population genomics has only superficially addressed issues of power and political process. Accordingly, questions of politics and governance pervade the analysis of three population genomics case studies that follow: the Human Genome Diversity Project, Iceland's Health Sector Database, and "Clinical Genomics" as defined by the Beth Israel-Ardais collaboration. An examination of these case studies reveals that the common law, U.S. regulatory law, and international law have not developed the political sophistication to make the traditional promises of biomedical ethics--respect for autonomy, justice, and beneficence--come to fruition. Further, comparisons of these projects illuminate three areas ripe for reframing--informed consent, expert ethical oversight, and commercial benefits. Four avenues of reform are suggested.

Entities:  

Keywords:  Analytical Approach; Beth Israel Hospital (Boston); Biomedical and Behavioral Research; Federal Policy (Common Rule) for the Protection of Human Subjects 1991; Genetics and Reproduction; Legal Approach; National Bioethics Advisory Commission; deCode Genetics

Mesh:

Year:  2003        PMID: 15156881

Source DB:  PubMed          Journal:  Jurimetrics        ISSN: 0897-1277


  2 in total

1.  The ethics of biobanking: key issues and controversies.

Authors:  Heather Widdows; Sean Cordell
Journal:  Health Care Anal       Date:  2011-09

2.  Comparison of participant information and informed consent forms of five European studies in genetic isolated populations.

Authors:  Deborah Mascalzoni; A Cecile J W Janssens; Alison Stewart; Peter Pramstaller; Ulf Gyllensten; Igor Rudan; Cornelia M van Duijn; James F Wilson; Harry Campbell; Ruth M C Quillan
Journal:  Eur J Hum Genet       Date:  2009-10-14       Impact factor: 4.246

  2 in total

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