posted on 2023-05-22, 01:12authored byDianne 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, Meslin, E, O'Doherty, K, Prainsack, B, Shabani, M, Tabor, H, Thorogood, A, de Vries, J
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.