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NPJ Genom Med. 2018 Jul 23;3:17. doi: 10.1038/s41525-018-0057-4. eCollection 2018.

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

Author information

1
1Harris Manchester College, University of Oxford, Mansfield Road, Oxford, OX1 3TD UK.
2
2Public Population Project in Genomics and Society (P3G), McGill University and Genome Quebec Innovation Centre, 740 Dr Penfield Avenue, Suite 5104, Montreal, QC H3A 0G1 Canada.
3
Stewardly, Centre for Social Innovation, Suite 400, 215 Spadina Ave., Toronto, ON M5T 2C7 Canada.
4
IAMOPEN, Toronto, Canada.
5
5Broad Institute of MIT and Harvard, 415 Main Street, Cambridge, MA 02142 USA.
6
CommonAccord, www.commonaccord.org, Paris, France.
7
7Department of Genetics and Genome Biology, University of Leicester, Adrian Building, University Road, Leicester, LE1 7RH UK.
8
8Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, suite 5200, Montreal, QC H3A 0G1 Canada.
9
9Walter and Eliza Hall Institute, 1G Royal Parade, Parkville, VIC 3052 Australia.
10
10The University of Melbourne, Melbourne, VIC 3010 Australia.
11
11Sage Bionetworks, 1100 Fairview Ave. N., Mailstop M1-C108, Seattle, WA 98109 USA.

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 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.

Conflict of interest statement

The authors declare no competing interests.

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