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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.
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Genetics

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MLA
O’Doherty, Kieran C., et al. “Toward Better Governance of Human Genomic Data.” NATURE GENETICS, vol. 53, no. 1, 2021, pp. 2–8, doi:10.1038/s41588-020-00742-6.
APA
O’Doherty, K. C., Shabani, M., Dove, E. S., Bentzen, H. B., Borry, P., Burgess, M. M., … Burke, W. (2021). Toward better governance of human genomic data. NATURE GENETICS. https://doi.org/10.1038/s41588-020-00742-6
Chicago author-date
O’Doherty, Kieran C., Mahsa Shabani, Edward S. Dove, Heidi Beate Bentzen, Pascal Borry, Michael M. Burgess, Don Chalmers, et al. 2021. “Toward Better Governance of Human Genomic Data.” NATURE GENETICS. https://doi.org/10.1038/s41588-020-00742-6.
Chicago author-date (all authors)
O’Doherty, Kieran C., Mahsa Shabani, Edward S. Dove, Heidi Beate Bentzen, Pascal Borry, Michael M. Burgess, Don Chalmers, Jantina De Vries, Lisa Eckstein, Stephanie M. Fullerton, Eric Juengst, Kazuto Kato, Jane Kaye, Bartha Maria Knoppers, Barbara A. Koenig, Spero M. Manson, Kimberlyn M. McGrail, Amy L. McGuire, Eric M. Meslin, Dianne Nicol, Barbara Prainsack, Sharon F. Terry, Adrian Thorogood, and Wylie Burke. 2021. “Toward Better Governance of Human Genomic Data.” NATURE GENETICS. doi:10.1038/s41588-020-00742-6.
Vancouver
1.
O’Doherty KC, Shabani M, Dove ES, Bentzen HB, Borry P, Burgess MM, et al. Toward better governance of human genomic data. Vol. 53, NATURE GENETICS. 2021. p. 2–8.
IEEE
[1]
K. C. O’Doherty et al., “Toward better governance of human genomic data,” NATURE GENETICS, vol. 53, no. 1. pp. 2–8, 2021.
@misc{8686798,
  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.}},
  author       = {{O’Doherty, Kieran C. and Shabani, Mahsa and Dove, Edward S. and Bentzen, Heidi Beate and Borry, Pascal and Burgess, Michael M. and Chalmers, Don and De Vries, Jantina and Eckstein, Lisa and Fullerton, Stephanie M. and Juengst, Eric and Kato, Kazuto and Kaye, Jane and Knoppers, Bartha Maria and Koenig, Barbara A. and Manson, Spero M. and McGrail, Kimberlyn M. and McGuire, Amy L. and Meslin, Eric M. and Nicol, Dianne and Prainsack, Barbara and Terry, Sharon F. and Thorogood, Adrian and Burke, Wylie}},
  issn         = {{1061-4036}},
  keywords     = {{Genetics}},
  language     = {{eng}},
  number       = {{1}},
  pages        = {{2--8}},
  series       = {{NATURE GENETICS}},
  title        = {{Toward better governance of human genomic data}},
  url          = {{http://dx.doi.org/10.1038/s41588-020-00742-6}},
  volume       = {{53}},
  year         = {{2021}},
}

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