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Registered access: authorizing data access

delete2018-08-02
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OA
AI
S
Stephanie O. M. Dyke *
M
Mikael Lindén
I
Ilkka Lappalainen
R
Rambla, Jordi
K
Knox Carey
D
David Lloyd
D
Dylan Spalding
M
Moran N. Cabili
G
Giselle Kerry
J
Julia Foreman
T
Tim Cutts
M
Mahsa Shabani
L
Laura Lyman Rodriguez
M
Maximilian Haeussler
B
Brian Walsh
姜晓谦 cover
姜晓谦 (Xiaoqian Jiang)
王爽 cover
王爽 (Shuang Wang)
D
Daniel Perrett
T
Tiffany Boughtwood
A
Andreas Matern
A
Anthony J. Brookes
M
Miro Cupak
M
Marc Fiume
R
Ravi Pandya
I
Ilia Tulchinsky
S
Serena Scollen
J
Juha Törnroos
S
Samir Das
A
Alan C. Evans
B
Bradley Malin
S
Stephan Beck
S
Steven E. Brenner
T
Tommi Nyrönen
N
Niklas Blomberg
H
Helen V. Firth
M
Matthew E. Hurles
A
Anthony Philippakis
G
Gunnar Rätsch
M
Michael Brudno
K
Kym M. Boycott
H
Heidi L. Rehm
M
Michael Baudis
S
Stephen T. Sherry
Y
Yoshihiro Kato
B
Bartha Maria Knoppers
D
Dixie B. Baker
P
Paul Flicek
DOI:10.1038/s41431-018-0219-ydelete
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Abstract

Abstract

En 中文
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.
Keywords:
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European Journal of Human Genetics cover
European Journal of Human Genetics
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