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  • Research ethics recommendat...
    Caulfield, Timothy; McGuire, Amy L; Cho, Mildred; Buchanan, Janet A; Burgess, Michael M; Danilczyk, Ursula; Diaz, Christina M; Fryer-Edwards, Kelly; Green, Shane K; Hodosh, Marc A; Juengst, Eric T; Kaye, Jane; Kedes, Laurence; Knoppers, Bartha Maria; Lemmens, Trudo; Meslin, Eric M; Murphy, Juli; Nussbaum, Robert L; Otlowski, Margaret; Pullman, Daryl; Ray, Peter N; Sugarman, Jeremy; Timmons, Michael

    PLoS biology, 03/2008, Letnik: 6, Številka: 3
    Journal Article

    ...all known genetic predispositions will be available and, depending on the data sharing policy, accessible to a wide range of researchers and, possibly, the public at large--this, at a time when we are still seeking to understand the social, clinical, and personal implications of genetic information. More research and policy analysis on the issues associated with data release is clearly needed, including an analysis of the actual harms and benefits resulting from publicly accessible data; the implications for family members and relevant communities; the appropriate balance between public access and individual privacy interests; and considerations regarding compensation for research-related injury resulting from participation in personal genome research.