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Registered access: authorizing data access.

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posted on 2019-07-10, 15:45 authored by SOM Dyke, M Linden, I Lappalainen, JR De Argila, K Carey, D Lloyd, JD Spalding, MN Cabili, G Kerry, J Foreman, T Cutts, M Shabani, LL Rodriguez, M Haeussler, B Walsh, X Jiang, S Wang, D Perrett, T Boughtwood, A Matern, AJ Brookes, M Cupak, M Fiume, R Pandya, I Tulchinsky, S Scollen, J Törnroos, S Das, AC Evans, BA Malin, S Beck, SE Brenner, T Nyrönen, N Blomberg, HV Firth, M Hurles, AA Philippakis, G Rätsch, M Brudno, KM Boycott, HL Rehm, M Baudis, ST Sherry, K Kato, BM Knoppers, D Baker, P Flicek
The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model-"registered access"-to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research. A registered access policy would enable a range of categories of users to gain access, starting with researchers and clinical care professionals. It would also facilitate general use and reuse of data but within the bounds of consent restrictions and other ethical obligations. In piloting registered access with the Scientific Demonstration data sharing projects of GA4GH, we provide additional ethics, policy and technical guidance to facilitate the implementation of this access model in an international setting.

Funding

SOMD is supported by the Canadian Institutes of Health Research (EP1-120608; EP1-120609; CEE-151618), Genome Quebec, Genome Canada, the Government of Canada, the Ministère de l’Économie, Innovation et Exportation du Québec (Can-SHARE grant 141210), and the Canada Research Chair in Law and Medicine. ML, IL, JT, and TN are supported by the ELIXIR, the research infrastructure for life-science data, and the H2020 ELIXIR-EXCELERATE grant 676559. IL and GK are supported by the European Molecular Biology Laboratory; MS by Research Foundation Flanders (FWO); MH by NIH/NHGRI 5U41HG002371-15; SW by NIH/NHGRI R00HG008175; S Beck by the National Institute for Health Research UCLH Biomedical Research Centre (BRC369/CN/SB/101310); S Brenner by NIH/NHGRI U41 HG007346; BMK by the Canada Research Chair in Law and Medicine; and PF by WT201535/Z/16/Z and the European Molecular Biology Laboratory.

History

Citation

European Journal of Human Genetics, 2018

Author affiliation

/Organisation/COLLEGE OF LIFE SCIENCES/Biological Sciences/Genetics and Genome Biology

Version

  • VoR (Version of Record)

Published in

European Journal of Human Genetics

Publisher

Springer Nature for European Society of Human Genetics

eissn

1476-5438

Acceptance date

2018-06-20

Copyright date

2018

Available date

2019-07-10

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https://www.nature.com/articles/s41431-018-0219-y

Language

en

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    CC BY 4.0

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