Consent insufficient for data release

Dianne Nicol; Lisa  Eckstein; Heidi Beate  Bentzen; Pascal  Borry; Mike  Burgess; Wylie  Burke; Don  Chalmers; Mildred  Cho; Edward Dove; Stephanie  Fullerton; Ryuchi  Ida; Kazuto  Kato; Jane  Kaye; Barbara  Koenig; Spero  Manson; Kimberlyn  McGrail; Eric  Meslin; Kieran  O'Doherty; Barbara Prainsack; Mahsa  Shabani; Holly  Tabor; Adrian  Thorogood; Jantina  de Vries

doi:10.1126/science.aax0892

Consent insufficient for data release

Dianne Nicol, Lisa Eckstein, Heidi Beate Bentzen, Pascal Borry, Mike Burgess, Wylie Burke, Don Chalmers, Mildred Cho, Edward Dove, Stephanie Fullerton, Ryuchi Ida, Kazuto Kato, Jane Kaye, Barbara Koenig, Spero Manson, Kimberlyn McGrail, Eric Meslin, Kieran O'Doherty, Barbara Prainsack, Mahsa ShabaniHolly Tabor, Adrian Thorogood, Jantina de Vries

Research output: Contribution to journal › Letter

8 Citations (Scopus)

Abstract

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.

Original language	English
Pages (from-to)	445-446
Number of pages	2
Journal	Science
Volume	364
Issue number	6439
DOIs	https://doi.org/10.1126/science.aax0892
Publication status	Published - 3 May 2019

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title = "Consent insufficient for data release",

abstract = "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.",

author = "Dianne Nicol and Lisa Eckstein and Bentzen, {Heidi Beate} and Pascal Borry and Mike Burgess and Wylie Burke and Don Chalmers and Mildred Cho and Edward Dove and Stephanie Fullerton and Ryuchi Ida and Kazuto Kato and Jane Kaye and Barbara Koenig and Spero Manson and Kimberlyn McGrail and Eric Meslin and Kieran O'Doherty and Barbara Prainsack and Mahsa Shabani and Holly Tabor and Adrian Thorogood and {de Vries}, Jantina",

year = "2019",

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doi = "10.1126/science.aax0892",

language = "English",

volume = "364",

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Nicol, D, Eckstein, L, Bentzen, HB, Borry, P, Burgess, M, Burke, W, Chalmers, D, 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 2019, 'Consent insufficient for data release', Science, vol. 364, no. 6439, pp. 445-446. https://doi.org/10.1126/science.aax0892

TY - JOUR

T1 - Consent insufficient for data release

AU - Nicol, Dianne

AU - Eckstein, Lisa

AU - Bentzen, Heidi Beate

AU - Borry, Pascal

AU - Burgess, Mike

AU - Burke, Wylie

AU - Chalmers, Don

AU - Cho, Mildred

AU - Dove, Edward

AU - Fullerton, Stephanie

AU - Ida, Ryuchi

AU - Kato, Kazuto

AU - Kaye, Jane

AU - Koenig, Barbara

AU - Manson, Spero

AU - McGrail, Kimberlyn

AU - Meslin, Eric

AU - O'Doherty, Kieran

AU - Prainsack, Barbara

AU - Shabani, Mahsa

AU - Tabor, Holly

AU - Thorogood, Adrian

AU - de Vries, Jantina

PY - 2019/5/3

Y1 - 2019/5/3

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85065582504&partnerID=8YFLogxK

U2 - 10.1126/science.aax0892

DO - 10.1126/science.aax0892

M3 - Letter

VL - 364

SP - 445

EP - 446

JO - Science

JF - Science

IS - 6439

ER -

Consent insufficient for data release

Abstract

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