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  1. Ethical and Equitable Digital Health Research: Ensuring Self-Determination in Data Governance for Racialized Communities.Mozharul Islam, Arafaat A. Valiani, Ranjan Datta, Mohammad Chowdhury & Tanvir C. Turin - forthcoming - Cambridge Quarterly of Healthcare Ethics:1-11.
    Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach honors and builds on Indigenous (...)
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  • Reservations.Laura Stark - 2022 - Isis 113 (1):128-136.
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  • Response to Open Peer Commentaries: Distinguishing the “Gift” from “Donation” as a Path toward Reciprocity and Relational Ethics.Sandra Soo-Jin Lee - 2021 - American Journal of Bioethics 21 (4):W1-W3.
    Precision medicine relies on data and biospecimens from participants who willingly offer their personal information on the promise that this act will ultimately result in knowledge that will improv...
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  • The Pitfalls of Genomic Data Diversity.Anna Jabloner & Alexis Walker - 2023 - Hastings Center Report 53 (5):10-13.
    Biomedical research recruitment today focuses on including participants representative of global genetic variation—rightfully so. But ethnographic attention to practices of inclusion highlights how this agenda often transforms into “predatory inclusion,” simplistic pushes to get Black and brown people into genomic databases. As anthropologists of medicine, we argue that the question of how to get from diverse data to concrete benefit for people who are marginalized cannot be presumed to work itself out as a byproduct of diverse datasets. To actualize the (...)
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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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