A major challenge to human genome data sharing is navigating restrictions on secondary use which often has complex/ambiguous restrictions on reuse deduced from consent forms, which require significant human effort by Data Access Committees (DACs) to understand and determine if researchers can use data.
DUOS and REMS have been developed specifically by major global efforts to semi-automate and efficiently manage compliant sharing of data. They mimic the data access request review processes common to DACs, and capture and structure data use restrictions and data access requests as machine-readable data in controlled language, including the GA4GH Data Use Ontology.
In Australia, we are establishing these technologies through our Human Genomes Platform Project.
This subproject will:
- Explore features of DUOS and REMS
- Understand interfacing of either DUOS or REMS using the participating repositories’ APIs
- Interface the most appropriate system (REMS/DUOS) to cohort datasets.
- Enable DACs to responsibly and efficiently share their cohorts