Consent insufficient for data release

Author:

Nicol Dianne1,Eckstein Lisa1,Bentzen Heidi Beate23,Borry Pascal4,Burgess Mike5,Burke Wylie6,Chalmers Don1,Cho Mildred7,Dove Edward8,Fullerton Stephanie6,Ida Ryuchi9,Kato Kazuto10,Kaye Jane11,Koenig Barbara12,Manson Spero13,McGrail Kimberlyn5,Meslin Eric14,O'Doherty Kieran15,Prainsack Barbara16,Shabani Mahsa17,Tabor Holly7,Thorogood Adrian18,de Vries Jantina19

Affiliation:

1. Law Faculty, University of Tasmania, Hobart, Tasmania 7001, Australia.

2. Norwegian Research Center for Computers and Law, Faculty of Law, University of Oslo, 0130 Oslo, Norway.

3. Centre for Medical Ethics, Faculty of Medicine, University of Oslo, 0318 Oslo, Norway.

4. Department of Public Health and Primary Care, University of Leuven, 3000 Leuven, Belgium

5. School of Population and Public Health, University of British Columbia, Vancouver, BC V6T 1Z3, Canada.

6. School of Medicine, University of Washington, Seattle, WA 98195, USA.

7. Centre for Biomedical Ethics, Stanford Medicine, Stanford, CA 94305, USA.

8. School of Law, University of Edinburgh, Edinburgh EH8 9YL, UK.

9. Shiga University, Shiga 522-8522, Japan.

10. Graduate School of Medicine, Osaka University, Osaka 565-0871, Japan.

11. Centre for Health, Law, and Emergent Technologies, University of Oxford, Oxford, UK.

12. School of Nursing, University of California, San Francisco, San Francisco, CA 94143, USA.

13. Colorado School of Public Health, University of Colorado, Aurora, CO 80045, USA.

14. Council of Canadian Academies, Ottawa, ON K2P 2K3, Canada.

15. Department of Psychology, University of Guelph, Guelph, ON N1G 2WY, Canada.

16. Department of Political Science, University of Vienna, 1140 Vienna, Austria.

17. Centre for Biomedical Ethics and Law, University of Leuven, 3000 Leuven, Belgium.

18. Centre of Genomics Policy, McGill University, Montreal, QC H3A 0G1, Canada.

19. Department of Medicine, University of Cape Town, Cape Town 7925, South Africa.

Publisher

American Association for the Advancement of Science (AAAS)

Subject

Multidisciplinary

Reference7 articles.

1. To share or not to share: A randomized trial of consent for data sharing in genome research

2. N. Shah ., Eur. J. Hum. Genet. 10.1038/s41431-019-0344-2 (2019).

3. J. Teng ., Intl. J. Pop. Data Sci. 3, 364 (2018).

4. Community Engagement for Big Epidemiology: Deliberative Democracy as a Tool

5. S. Zuboff, The Age of Surveillance Capitalism: The Fight for the Future at the New Frontier of Power (PublicAffairs, 2019).

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