دورية أكاديمية
Responsible sharing of biomedical data and biospecimens via the "Automatable Discovery and Access Matrix" (ADA-M).
| العنوان: | Responsible sharing of biomedical data and biospecimens via the "Automatable Discovery and Access Matrix" (ADA-M). |
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| المؤلفون: | Woolley JP; 1Harris Manchester College, University of Oxford, Mansfield Road, Oxford, OX1 3TD UK., Kirby E; 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., Leslie J; Stewardly, Centre for Social Innovation, Suite 400, 215 Spadina Ave., Toronto, ON M5T 2C7 Canada., Jeanson F; IAMOPEN, Toronto, Canada., Cabili MN; 5Broad Institute of MIT and Harvard, 415 Main Street, Cambridge, MA 02142 USA., Rushton G; 5Broad Institute of MIT and Harvard, 415 Main Street, Cambridge, MA 02142 USA., Hazard JG; CommonAccord, www.commonaccord.org, Paris, France., Ladas V; 7Department of Genetics and Genome Biology, University of Leicester, Adrian Building, University Road, Leicester, LE1 7RH UK., Veal CD; 7Department of Genetics and Genome Biology, University of Leicester, Adrian Building, University Road, Leicester, LE1 7RH UK., Gibson SJ; 7Department of Genetics and Genome Biology, University of Leicester, Adrian Building, University Road, Leicester, LE1 7RH UK., Tassé AM; 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., Dyke SOM; 8Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, suite 5200, Montreal, QC H3A 0G1 Canada., Gaff C; 9Walter and Eliza Hall Institute, 1G Royal Parade, Parkville, VIC 3052 Australia.; 10The University of Melbourne, Melbourne, VIC 3010 Australia., Thorogood A; 8Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, suite 5200, Montreal, QC H3A 0G1 Canada., Knoppers BM; 8Centre of Genomics and Policy, McGill University, 740 Dr. Penfield Avenue, suite 5200, Montreal, QC H3A 0G1 Canada., Wilbanks J; 11Sage Bionetworks, 1100 Fairview Ave. N., Mailstop M1-C108, Seattle, WA 98109 USA., Brookes AJ; 7Department of Genetics and Genome Biology, University of Leicester, Adrian Building, University Road, Leicester, LE1 7RH UK. |
| المصدر: | NPJ genomic medicine [NPJ Genom Med] 2018 Jul 23; Vol. 3, pp. 17. Date of Electronic Publication: 2018 Jul 23 (Print Publication: 2018). |
| نوع المنشور: | Journal Article; Review |
| اللغة: | English |
| بيانات الدورية: | Publisher: Springer Nature in partnership with the Center of Excellence in Genomic Medicine Research at King Abdulaziz University Country of Publication: England NLM ID: 101685193 Publication Model: eCollection Cited Medium: Internet ISSN: 2056-7944 (Electronic) Linking ISSN: 20567944 NLM ISO Abbreviation: NPJ Genom Med Subsets: PubMed not MEDLINE |
| أسماء مطبوعة: | Publication: 2016- : [London] : Springer Nature in partnership with the Center of Excellence in Genomic Medicine Research at King Abdulaziz University Original Publication: [London] : Nature Publishing Group, published in partnership with Center of Excellence in Genomic Medicine Research, [2016]- |
| مستخلص: | 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. Competing Interests: The authors declare no competing interests. |
| References: | Nat Genet. 2012 Jan 27;44(2):121-6. (PMID: 22281772) PLoS Genet. 2016 Jan 21;12(1):e1005772. (PMID: 26796797) |
| تواريخ الأحداث: | Date Created: 20180801 Latest Revision: 20201001 |
| رمز التحديث: | 20231215 |
| مُعرف محوري في PubMed: | PMC6056554 |
| DOI: | 10.1038/s41525-018-0057-4 |
| PMID: | 30062047 |
| قاعدة البيانات: | MEDLINE |
Full Text Finder | تدمد: | 2056-7944 |
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| DOI: | 10.1038/s41525-018-0057-4 |