The National Institutes of Health (NIH) Data Access Committees (DACs) play an important role in ensuring that controlled-access datasets (that contain potentially identifiable data and require approval prior to access) are used in a manner that is consistent with the informed consent of the study’s participants. The growing demand for controlled-access datasets has spurred the development of new semi-automated systems that retains oversight by the NIH DACs while enabling efficient review and approval of data access requests (DARs).
The Data Use Oversight System (DUOS) is a semi-automated study registration and DAR management service informed by the GA4GH DUO standard, which enables the secondary use of human genomics and other controlled-access data in compliance with the informed consent of a study’s participants. Four NIH DACs have tested DUOS to various extents and have provided feedback on the potential of the system to support NIH’s needs. The goal of the pilot was to assess whether DUOS can enhance current methods for overseeing and granting data access in ways that improve the user experience of the DACs, researchers, and institutional signing officials.
DUOS enables pre-authorization of researchers by their institutions to apply for controlled-access data. It is hoped that this initiative, conceptualized as “the Library Card,” will reduce the administrative burden on signing officials and the decrease the review and approval times of researcher DARs.
Last updated: December 13, 2023