Dyke SO, Philippakis AA, Rambla De Argila J, Paltoo DN, Luetkemeier ES, Knoppers BM, Brookes AJ, Spalding JD, Thompson M, Roos M, Boycott KM, Brudno M, Hurles, Rehm HL, Matern A, Fiume M, Sherry ST
PLos Genetics 12(1):e1005772, January 2016
Restrictions on data use may be necessary in order to respect the consent of research participants and patients. As members of the Global Alliance for Genomics and Health (Global Alliance), we examined the variation in data use conditions that are based on consent provisions for genomics datasets in research and clinical settings based on the following: (1) a review of guidance from the National Institutes of Health; (2) a survey of data use conditions for data accessed within a large research institute, the Broad Institute of MIT and Harvard, and for data held within the European Genome-phenome Archive (EGA) of the European Bioinformatics Institute (EMBL-EBI) and Centre for Genomic Regulation (CRG); and (3) consultation with the international scientific community via the Global Alliance Data Working Group and with the Matchmaker Exchange Project. Based on our study, we propose a structure for recording data use “categories” and “requirements” with a view to support maximum data use and integration.