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  1. Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?Carolyn Riley Chapman, Gwendolyn P. Quinn, Heini M. Natri, Courtney Berrios, Patrick Dwyer, Kellie Owens, Síofra Heraty & Arthur L. Caplan - 2023 - American Journal of Bioethics:1-14.
    Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the informed (...)
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  • Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research.Deanne Dunbar Dolan, Mildred K. Cho & Sandra Soo-Jin Lee - 2023 - American Journal of Bioethics 23 (7):1-4.
    From its inception, genomics has been a speculative endeavor, fixated on a far-off horizon that would deliver on the promise of targeted diagnostics and individualized therapeutics (Fortun 2008). M...
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  • Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits.Heini M. Natri & Carolyn Riley Chapman - 2024 - Hastings Center Report 54 (S2):56-65.
    Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set (...)
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