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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 - forthcoming - 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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  • Response to Open Peer Commentaries on “Privacy and Health Practices in the Digital Age”.Monique Pyrrho, Leonardo Cambraia & Viviane Ferreira de Vasconcelos - 2022 - American Journal of Bioethics 22 (12):5-8.
    Privacy must be protected for social reasons. That is what was argued in “Privacy and Health Practices in the Digital Age” (Pyrrho, Cambraia, and de Vasconcelos 2022). Versalovic, Goering, and Klei...
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  • A contextual integrity approach to genomic information: what bioethics can learn from big data ethics.Nina F. de Groot - forthcoming - Medicine, Health Care and Philosophy:1-13.
    Genomic data is generated, processed and analysed at an increasingly rapid pace. This data is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genomic information, or research use of commercial genomic data. This paper (1) argues that an informed consent (...)
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