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Title: Registered access: authorizing data access.
Authors: Dyke, SOM
Linden, M
Lappalainen, I
De Argila, JR
Carey, K
Lloyd, D
Spalding, JD
Cabili, MN
Kerry, G
Foreman, J
Cutts, T
Shabani, M
Rodriguez, LL
Haeussler, M
Walsh, B
Jiang, X
Wang, S
Perrett, D
Boughtwood, T
Matern, A
Brookes, AJ
Cupak, M
Fiume, M
Pandya, R
Tulchinsky, I
Scollen, S
Törnroos, J
Das, S
Evans, AC
Malin, BA
Beck, S
Brenner, SE
Nyrönen, T
Blomberg, N
Firth, HV
Hurles, M
Philippakis, AA
Rätsch, G
Brudno, M
Boycott, KM
Rehm, HL
Baudis, M
Sherry, ST
Kato, K
Knoppers, BM
Baker, D
Flicek, P
First Published: 2-Aug-2018
Publisher: Springer Nature for European Society of Human Genetics
Citation: European Journal of Human Genetics, 2018
Abstract: 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.
DOI Link: 10.1038/s41431-018-0219-y
eISSN: 1476-5438
Version: Publisher Version
Status: Peer-reviewed
Type: Journal Article
Rights: Copyright © the authors, 2018. This is an open-access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Appears in Collections:Published Articles, Dept. of Genetics

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