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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, 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.

Funding

Australian Research Council

History

Publication title

Science

Volume

364

Issue

6439

Pagination

446

ISSN

0036-8075

Department/School

Faculty of Law

Publisher

American Association for the Advancement of Science

Place of publication

Washington, USA

Repository Status

  • Restricted

Socio-economic Objectives

Technological ethics; Law reform

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