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Governing population genomics: law, bioethics, and biopolitics in three case studies
- Source :
- Jurimetrics. 43(2)
- Publication Year :
- 2004
-
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.
- Subjects :
- Genetic Research
Internationality
Human Rights
Research Subjects
Advisory Committees
Decision Making
Iceland
Tissue Banks
Risk Assessment
Medical Records
Patents as Topic
Social Justice
Human Genome Project
Commodification
Humans
Industry
Ethical Review
Genetic Privacy
Blood Specimen Collection
Informed Consent
Public Sector
Conflict of Interest
Politics
Racial Groups
Beneficence
Bioethics
Tissue Donors
United States
Genetics, Population
Human Experimentation
Personal Autonomy
Government Regulation
Private Sector
Databases, Nucleic Acid
Presumed Consent
Ethics Committees, Research
Subjects
Details
- ISSN :
- 08971277
- Volume :
- 43
- Issue :
- 2
- Database :
- OpenAIRE
- Journal :
- Jurimetrics
- Accession number :
- edsair.pmid..........c838d5800c25f8eb40b754e8486988ce