Biomedical research is rapidly progressing and often produces large amounts of data and resources that should be widely accessible to researchers and clinicians to maximize output. Sharing of data can be particularly challenging as laws and regulations from across jurisdictions must be followed in addition to scientific best practices. Consequently, there is an urgent need for a systematic, structured, computer-readable way to capture, communicate, and manage biomedical data and resource sharing.
The Automatable Discovery and Access (ADA) Task Force, co-organized by the Global Alliance for Genomics and Health (GA4GH) and IRDiRC, was established to explore machine readability of consent and its impact on data use and accessibility. The Task Force, co-chaired by Anthony Brookes (University of Leicester) and John Wilbanks (Sage Bionetworks), consisted of over 50 members from academia, industry, and non-profit sectors. The resulting Automatable Discovery and Access Matrix (ADA-M) was released in late 2016. A key feature of ADA-M is the possibility to create structured metadata “Profiles” for any regulatory condition. Therefore, the system is flexible in terms of the information it can convey, while at the same time structured to provide the required conditions and restrictions to allow for the sharing of data across different regulatory jurisdictions. These issues, the work done by the Task Force, and potential applications were described in the Genomic Medicine publication.
Since its release, ADA-M has been integrated in whole or in part by many organizations, including: Australian Genomics Health Alliance, the Solve-RD project, members of the Health Data Research UK Institute and the US Broad Institute’s DUOS project. It has also been actively evaluated by the EU Biobanking and BioMolecular resources Research Infrastructure (BBMRI), the Canadian Care4Rare-SOLVE and the UK Tissue Directory and Coordination Center. The authors emphasized that ADA-M “is designed to expand, evolve and adapt with use”, making its global use by researchers crucial in promoting international collaboration. Many more challenges remain to optimize biomedical data sharing but initiatives like ADA-M, that provides standardized and interoperable system, are key to accelerate the process.
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