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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Ethical and Practical Challenges of Sharing Data From Genome-Wide Association Studies: The eMERGE Consortium Experience McGuire, Amy L; Basford, Melissa; Dressler, Lynn G; Fullerton, Stephanie M; Koenig, Barbara A; Li, Rongling; McCarty, Cathy A; Ramos, Erin; Smith, Maureen E; Somkin, Carol P; Waudby, Carol; Wolf, Wendy A; Clayton, Ellen Wright (2011-07)In 2007, the National Human Genome Research Institute (NHGRI) established the Electronic MEdical Records and GEnomics (eMERGE) Consortium (www.gwas.net) to develop, disseminate, and apply approaches to research that combine ...