File(s) under permanent embargo
Consent insufficient for data release
journal contribution
posted on 2023-05-22, 01:02 authored by Dianne NicolDianne Nicol, Lisa EcksteinLisa Eckstein, Bentzen, HB, Borry, P, Burgess, M, Burke, W, Donald ChalmersDonald Chalmers, Cho, M, Dove, E, Fullerton, S, Ida, R, Kato, K, Kaye, J, Koenig, B, Manson, S, McGrail, K, McGuire, A, Meslin, E, O'Doherty, K, Prainsack, B, Shabani, M, Tabor, H, Thorogood, A, de Vries, JIn 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.
Funding
Australian Research Council
History
Publication title
ScienceVolume
364Issue
6439Pagination
446ISSN
0036-8075Department/School
Faculty of LawPublisher
American Association for the Advancement of SciencePlace of publication
Washington, USARepository Status
- Restricted