Responsible sharing of biomedical data and biospecimens via the 'Automatable Discovery and Access Matrix' (ADA-M)
| Autor: | Colin Veal, Anne-Marie Tassé, John Wilbanks, Gregory A. Rushton, Spencer J. Gibson, Adrian Thorogood, Bartha Maria Knoppers, Emily Kirby, Clara Gaff, J. Patrick Woolley, Stephanie O.M. Dyke, Anthony J. Brookes, Moran N. Cabili, Vagelis Ladas, Josh Leslie, Francis Jeanson, James G. Hazard |
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| Rok vydání: | 2018 |
| Předmět: |
0301 basic medicine
lcsh:QH426-470 Application programming interface Computer science End user lcsh:R lcsh:Medicine 030105 genetics & heredity Data science Shared resource Metadata lcsh:Genetics 03 medical and health sciences 030104 developmental biology Data access Documentation Information model Perspective Genetics Molecular Biology Genetics (clinical) Software versioning |
| Zdroj: | npj Genomic Medicine, Vol 3, Iss 1, Pp 1-6 (2018) NPJ Genomic Medicine |
| ISSN: | 2056-7944 |
| DOI: | 10.1038/s41525-018-0057-4 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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