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Toward better governance of human genomic data
journal contribution
posted on 2023-05-21, 01:21 authored by O'Doherty, KC, Shabani, M, Dove, ES, Bentzen, HB, Borry, P, Burgess, MM, Donald ChalmersDonald Chalmers, De Vries, J, Lisa EcksteinLisa Eckstein, Fullerton, SM, Juengst, E, Kato, K, Kaye, J, Knoppers, BM, Koenig, BA, Manson, SM, McGrail, KM, McGuire, AL, Meslin, EM, Dianne NicolDianne Nicol, Prainsack, B, Terry, SF, Thorogood, A, Burke, WHere, we argue that, in line with the dramatic increase in the collection, storage and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to both enable wide access and protect against possible harms. However, the merits and limitations of different governance frameworks in achieving these twin aims are a matter of ongoing debate in the scientific community; indeed, best practices and points for consideration are notably absent in devising governance frameworks for genomic databases. According to our collective experience in devising and assessing governance frameworks, we identify five key functions of ‘good governance’ (or ‘better governance’) and three areas in which trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.
Funding
Australian Research Council
History
Publication title
Nature GeneticsVolume
53Pagination
2-8ISSN
1061-4036Department/School
Faculty of LawPublisher
Nature Publishing GroupPlace of publication
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