Secondary Uses and the Governance of De-Identified Data: Lessons From the Human Genome Diversity Panel
Fullerton, Stephanie M
Lee, Sandra S-J
BMC medical ethics 2011 September 26; 12: 16
Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel.
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