dc.date.accessioned | 2022-02-19T19:38:50Z | |
dc.date.available | 2022-02-19T19:38:50Z | |
dc.date.created | 2021-01-07T18:35:39Z | |
dc.date.issued | 2021 | |
dc.identifier.citation | O'Doherty, Kieran C. Shabani, Mahsa Dove, Edward S. Bentzen, Heidi Beate Borry, Pascal Burgess, Michael M. Chalmers, Don de Vries, Jantina Eckstein, Lisa Fullerton, Stephanie Juengst, Eric Kato, Kazuto Kaye, Jane Knoppers, Bartha Maria Koenig, Barbara Manson, Spero McGrail, Kimberlyn McGuire, Amy L. Meslin, Eric M. Nicol, Dianne Prainsack, Barbara Terry, Sharon F. Thorogood, Adrian Burke, Wylie . Toward better governance of human genomic data. Nature Genetics. 2021, 53, 2-8 | |
dc.identifier.uri | http://hdl.handle.net/10852/91169 | |
dc.description.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. | |
dc.language | EN | |
dc.publisher | Nature Portfolio | |
dc.title | Toward better governance of human genomic data | |
dc.type | Journal article | |
dc.creator.author | O'Doherty, Kieran C. | |
dc.creator.author | Shabani, Mahsa | |
dc.creator.author | Dove, Edward S. | |
dc.creator.author | Bentzen, Heidi Beate | |
dc.creator.author | Borry, Pascal | |
dc.creator.author | Burgess, Michael M. | |
dc.creator.author | Chalmers, Don | |
dc.creator.author | de Vries, Jantina | |
dc.creator.author | Eckstein, Lisa | |
dc.creator.author | Fullerton, Stephanie | |
dc.creator.author | Juengst, Eric | |
dc.creator.author | Kato, Kazuto | |
dc.creator.author | Kaye, Jane | |
dc.creator.author | Knoppers, Bartha Maria | |
dc.creator.author | Koenig, Barbara | |
dc.creator.author | Manson, Spero | |
dc.creator.author | McGrail, Kimberlyn | |
dc.creator.author | McGuire, Amy L. | |
dc.creator.author | Meslin, Eric M. | |
dc.creator.author | Nicol, Dianne | |
dc.creator.author | Prainsack, Barbara | |
dc.creator.author | Terry, Sharon F. | |
dc.creator.author | Thorogood, Adrian | |
dc.creator.author | Burke, Wylie | |
cristin.unitcode | 185,52,13,0 | |
cristin.unitname | Senter for medisinsk etikk | |
cristin.ispublished | true | |
cristin.fulltext | postprint | |
cristin.qualitycode | 2 | |
dc.identifier.cristin | 1867343 | |
dc.identifier.bibliographiccitation | info:ofi/fmt:kev:mtx:ctx&ctx_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.jtitle=Nature Genetics&rft.volume=53&rft.spage=2&rft.date=2021 | |
dc.identifier.jtitle | Nature Genetics | |
dc.identifier.volume | 53 | |
dc.identifier.issue | 1 | |
dc.identifier.startpage | 2 | |
dc.identifier.endpage | 8 | |
dc.identifier.doi | https://doi.org/10.1038/s41588-020-00742-6 | |
dc.identifier.urn | URN:NBN:no-93767 | |
dc.type.document | Tidsskriftartikkel | |
dc.type.peerreviewed | Peer reviewed | |
dc.source.issn | 1061-4036 | |
dc.identifier.fulltext | Fulltext https://www.duo.uio.no/bitstream/handle/10852/91169/1/Better%2Bgovernance%2Bof%2Bhuman%2Bgenomic%2Bdata_accepted%2Bversion.pdf | |
dc.type.version | AcceptedVersion | |
dc.relation.project | NORDFORSK/81105 | |
dc.relation.project | NFR/238999 | |