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Toward better governance of human genomic data


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, Toward better governance of human genomic data, Nature Genetics, 53, (1) pp. 2-8. ISSN 1061-4036 (2021) [Refereed Article]

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Copyright © 2021, Springer Nature A

DOI: doi:10.1038/s41588-020-00742-6


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 Details

Item Type:Refereed Article
Keywords:human genomic data, governance, data sharing
Research Division:Law and Legal Studies
Research Group:Law in context
Research Field:Medical and health law
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Law reform
UTAS Author:Chalmers, D (Professor Don Chalmers)
UTAS Author:Eckstein, L (Dr Lisa Eckstein)
UTAS Author:Nicol, D (Professor Dianne Nicol)
ID Code:145747
Year Published:2021
Funding Support:Australian Research Council (DP180100269)
Web of Science® Times Cited:19
Deposited By:Law
Deposited On:2021-08-04
Last Modified:2021-09-01

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