Registered access: authorizing data access.

Dyke SOM1,2, Linden M3,4, Lappalainen I3,4,5, De Argila JR6,7, Carey K, Lloyd D5,8, Spalding JD4, Cabili MN9, Kerry G4, Foreman J10, Cutts T10, Shabani M11, Rodriguez LL12, Haeussler M13, Walsh B14, Jiang X15, Wang S15, Perrett D10, Boughtwood T16, Matern A17, Brookes AJ18, Cupak M19, Fiume M19, Pandya R20, Tulchinsky I21, Scollen S5, Törnroos J3, Das S22, Evans AC22, Malin BA23, Beck S24, Brenner SE25, Nyrönen T3,26, Blomberg N5, Firth HV10, Hurles M10, Philippakis AA9, Rätsch G27, Brudno M28,29, Boycott KM30, Rehm HL9,31, Baudis M32, Sherry ST33, Kato K34, Knoppers BM35, Baker D36, Flicek P4.

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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.