Journal article

Responsible sharing of biomedical data and biospecimens via the "Automatable Discovery and Access Matrix" (ADA-M)

J Patrick Woolley, Emily Kirby, Josh Leslie, Francis Jeanson, Moran N Cahil, Gregory Rushton, James G Hazard, Vagelis Ladas, Colin D Veal, Spencer J Gibson, Anne-Marie Tasse, Stephanie OM Dyke, Clara Gaff, Adrian Thorogood, Bartha Maria Knoppers, John Wilbanks, Anthony J Brookes

npj Genomic Medicine | SPRINGERNATURE | Published : 2018

Abstract

Given the data-rich nature of modern biomedical research, there is a pressing need for a systematic, structured, computer-readable way to capture, communicate, and manage sharing rules that apply to biomedical resources. This is essential for responsible recording, versioning, communication, querying, and actioning of resource sharing plans. However, lack of a common "information model" for rules and conditions that govern the sharing of materials, methods, software, data, and knowledge creates a fundamental barrier. Without this, it can be virtually impossible for Research Ethics Committees (RECs), Institutional Review Boards (IRBs), Data Access Committees (DACs), biobanks, and end users to..

View full abstract

Grants

Awarded by GCOF, EU


Awarded by EMIF, EU


Awarded by Canadian Institutes of Health Research


Funding Acknowledgements

The ADA Task Team would like to acknowledge Petra Kauffmann, Lilian Lau, Mahsa Shabani, Susan Wallace, and the contribution of all members of the Automatable Discovery and Access Task Team who have been involved in various stages of the work. Additional substantial contributions are acknowledged from Global Alliance for Genomics and Health (GA4GH), the Public Population Project in Genomics and Society (P3G), Intel, and the International Rare Disease Research Consortium (IRDiRC). This project as a whole was made possible by the support of the Global Alliance for Genomics and Health (GA4GH) and the International Rare Disease Research Consortium (IRDiRC), whose funding supported the initial workshop, and the Public Population Project in Genomics and Society (P3G) as well as Intel, who funded the software. Funding and support for specific authors include: The contributions of A.J.B. were supported by GCOF (award #643439), and EMIF (award #115372), both EU sourced funding. The contributions of E.K., A.-M.T., S.O.M.D., and A.T. were funded by The Can-SHARE project, which is supported by Genome Quebec, Genome Canada, the Government of Canada, the Ministere de l'Economie, Innovation et Exportation du Quebec, and the Canadian Institutes of Health Research (fund #141210). The contributions of B.M.K. were made possible by the Canada Research Chair in Law and Medicine. The contributions of J.P.W. were made possible by a postdoctoral Fellowship at Harris Manchester College and related research done at the Center for Health, Law, and Emerging Technologies (HeLEX), both at the University of Oxford. All other contributions were graciously volunteered.