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Toward better governance of human genomic data

O'Doherty, KC, Shabani, M, Dove, ES, Bentzen, HB, Borry, P, Burgess, MM, Chalmers, D ORCID: 0000-0002-7925-8818, De Vries, J, Eckstein, L ORCID: 0000-0002-7161-7521, Fullerton, SM, Juengst, E, Kato, K, Kaye, J, Knoppers, BM, Koenig, BA, Manson, SM, McGrail, KM, McGuire, AL, Meslin, EM, Nicol, D ORCID: 0000-0002-6553-2839, Prainsack, B, Terry, SF, Thorogood, A and Burke, W 2021 , 'Toward better governance of human genomic data' , Nature Genetics, vol. 53, no. 1 , pp. 2-8 , doi: 10.1038/s41588-020-00742-6.

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Abstract

Here, 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.

Item Type: Article
Authors/Creators:O'Doherty, KC and Shabani, M and Dove, ES and Bentzen, HB and Borry, P and Burgess, MM and Chalmers, D and De Vries, J and Eckstein, L and Fullerton, SM and Juengst, E and Kato, K and Kaye, J and Knoppers, BM and Koenig, BA and Manson, SM and McGrail, KM and McGuire, AL and Meslin, EM and Nicol, D and Prainsack, B and Terry, SF and Thorogood, A and Burke, W
Keywords: human genomic data, governance, data sharing
Journal or Publication Title: Nature Genetics
Publisher: Nature Publishing Group
ISSN: 1061-4036
DOI / ID Number: 10.1038/s41588-020-00742-6
Copyright Information:

Copyright © 2021, Springer Nature A

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