Literature DB >> 11657428

Groups as gatekeepers to genomic research: conceptually confusing, morally hazardous, and practically useless.

Eric T Juengst.   

Abstract

Some argue that human groups have a stake in the outcome of population-genomics research and that the decision to participate in such research should therefore be subject to group permission. It is not possible, however, to obtain prior group permission, because the actual human groups under study, human demes, are unidentifiable before research begins. Moreover, they lack moral standing. If identifiable social groups with moral standing are used as proxies for demes, group approval could be sought, but at the expense of unfairly exposing these surrogates to risks from which prior group approval is powerless to protect them. Unless population genomics can proceed without targeting socially defined groups, or can find other ways of protecting them, it may fall to individuals to protect the interests of the groups they care about, and to scientists to warn their subjects of the need to do so.

Entities:  

Keywords:  Analytical Approach; Biomedical and Behavioral Research; Genetics and Reproduction; Human Genome Diversity Project; Human Genome Project

Mesh:

Year:  1998        PMID: 11657428     DOI: 10.1353/ken.1998.0010

Source DB:  PubMed          Journal:  Kennedy Inst Ethics J        ISSN: 1054-6863


  10 in total

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Authors:  Paul M McKeigue
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Authors:  Sarah E Gollust; Kira Apse; Barbara P Fuller; Paul Steven Miller; Barbara B Biesecker
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4.  Research with groups: group rights, group consent, and collaborative research commentary on "Protecting the Navajo People through tribal regulation of research".

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5.  The informed consent aftermath of the genetic revolution. An Italian example of implementation.

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Journal:  Med Health Care Philos       Date:  2007-07-19

6.  GOOD GIFTS FOR THE COMMON GOOD: Blood and Bioethics in the Market of Genetic Research.

Authors:  Deepa S Reddy
Journal:  Cult Anthropol       Date:  2007-08

7.  From "Personalized" to "Precision" Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.

Authors:  Eric Juengst; Michelle L McGowan; Jennifer R Fishman; Richard A Settersten
Journal:  Hastings Cent Rep       Date:  2016-09       Impact factor: 2.683

8.  "Bioethics in action" and human population genetics research.

Authors:  Paul Brodwin
Journal:  Cult Med Psychiatry       Date:  2005-06

9.  Community involvement in the ethical review of genetic research: lessons from American Indian and Alaska Native populations.

Authors:  Richard R Sharp; Morris W Foster
Journal:  Environ Health Perspect       Date:  2002-04       Impact factor: 9.031

10.  The environmental genome project: ethical, legal, and social implications.

Authors:  R R Sharp; J C Barrett
Journal:  Environ Health Perspect       Date:  2000-04       Impact factor: 9.031

  10 in total

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