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

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posted on 01.05.2019, 10:23 by JP Woolley, E Kirby, J Leslie, F Jeanson, MN Cabili, G Rushton, JG Hazard, V Ladas, CD Veal, SJ Gibson, A-M Tassé, SOM Dyke, C Gaff, A Thorogood, BM Knoppers, J Wilbanks, AJ Brookes
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 confidently track, manage, and interpret applicable legal and ethical requirements. This raises costs and burdens of data stewardship and decreases efficient and responsible access to data, biospecimens, and other resources. To address this, the GA4GH and IRDiRC organizations sponsored the creation of the Automatable Discovery and Access Matrix (ADA-M, read simply as "Adam"). ADA-M is a comprehensive information model that provides the basis for producing structured metadata "Profiles" of regulatory conditions, thereby enabling efficient application of those conditions across regulatory spheres. Widespread use of ADA-M will aid researchers in globally searching and prescreening potential data and/or biospecimen resources for compatibility with their research plans in a responsible and efficient manner, increasing likelihood of timely DAC approvals while also significantly reducing time and effort DACs, RECs, and IRBs spend evaluating resource requests and research proposals. Extensive online documentation, software support, video guides, and an Application Programming Interface (API) for ADA-M have been made available.

Funding

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 Ministère de l'Économie, Innovation et Exportation du Québec, 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.

History

Citation

npj Genomic Medicine, 2018, 3, 17

Author affiliation

/Organisation/COLLEGE OF LIFE SCIENCES/Biological Sciences/Genetics and Genome Biology

Version

VoR (Version of Record)

Published in

npj Genomic Medicine

Publisher

Nature Research (part of Springer Nature)

eissn

2056-7944

Acceptance date

08/06/2018

Copyright date

2018

Available date

01/05/2019

Publisher version

https://www.nature.com/articles/s41525-018-0057-4

Language

en

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