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

Eric T Juengst

    Kennedy Institute of Ethics Journal
    |October 20, 2001
    PubMed
    Summary

    Obtaining group permission for population genomics research is complex. Current methods cannot identify study groups beforehand, and using social groups as proxies poses ethical risks, necessitating individual responsibility.

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    Area of Science:

    • Genetics
    • Bioethics
    • Social Sciences

    Background:

    • Population genomics research involves human genetic data, raising questions about group consent.
    • Ethical frameworks debate whether human groups have a right to permit participation in genetic studies.

    Purpose of the Study:

    • To examine the feasibility and ethical implications of obtaining group permission for population genomics research.
    • To address the challenges posed by the identification and moral standing of human groups in genetic studies.

    Main Methods:

    • Analysis of ethical arguments concerning group consent in human population genomics.
    • Exploration of the practical difficulties in identifying and obtaining consent from specific human demes.
    • Evaluation of the risks associated with using identifiable social groups as proxies for demes.
    Keywords:
    Analytical ApproachBiomedical and Behavioral ResearchGenetics and ReproductionHuman Genome Diversity ProjectHuman Genome Project

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    Main Results:

    • Human demes, the actual groups studied in population genomics, are often unidentifiable prior to research.
    • Demes lack the moral standing to grant or deny permission for research.
    • Using identifiable social groups as proxies for consent can unfairly expose them to risks.

    Conclusions:

    • Prior group permission for population genomics research is currently not feasible due to the unidentifiable nature of demes.
    • Alternative ethical safeguards are needed to protect group interests in population genomics.
    • Individuals may need to protect their group's interests, and scientists must inform participants of this need.