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Consent insufficient for data release


Nicol, D and Eckstein, L and Bentzen, HB and Borry, P and Burgess, M and Burke, W and Chalmers, D and Cho, M and Dove, E and Fullerton, S and Ida, R and Kato, K and Kaye, J and Koenig, B and Manson, S and McGrail, K and McGuire, A and Meslin, E and O'Doherty, K and Prainsack, B and Shabani, M and Tabor, H and Thorogood, A and de Vries, J, Consent insufficient for data release, Science, 364, (6439) pp. 446. ISSN 0036-8075 (2019) [Letter or Note in Journal]

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DOI: doi:10.1126/science.aax7509


In their Policy Forum "Toward unrestricted use of public genomic data" (25 January, p. 350), R. I. Amann et al. argue that once data has been cleared for release to the public domain by institutions, it should be open for use without further restrictions. However, they neglect the key point that researchers and their institutions are entrusted by research participants, funders, and others with weighing the pros and cons of public data release. By suggesting that informed consent can provide a straightforward path to data release, they overlook evidence that once people understand their options, only a little more than half opt for open data sharing, and some refuse data sharing altogether.

Item Details

Item Type:Letter or Note in Journal
Keywords:informed consent, genomics, 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:Nicol, D (Professor Dianne Nicol)
UTAS Author:Eckstein, L (Dr Lisa Eckstein)
UTAS Author:Chalmers, D (Professor Don Chalmers)
ID Code:132534
Year Published:2019
Funding Support:Australian Research Council (DP180100269)
Deposited By:Office of the Faculty of Law
Deposited On:2019-05-10
Last Modified:2019-06-07

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