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The Data Use Ontology to streamline responsible access to human biomedical datasets

. 2021 Nov 10 ; 1 (2) : None. [epub] 20211110

Status PubMed-not-MEDLINE Language English Country United States Media electronic

Document type Journal Article

Grant support
U24 HG006941 NHGRI NIH HHS - United States
R24 OD011883 NIH HHS - United States
U24 HG010262 NHGRI NIH HHS - United States
Wellcome Trust - United Kingdom
RM1 HG010860 NHGRI NIH HHS - United States

Links

PubMed 34820659
PubMed Central PMC8591903
DOI 10.1016/j.xgen.2021.100028
PII: S2666-979X(21)00035-5
Knihovny.cz E-resources

Human biomedical datasets that are critical for research and clinical studies to benefit human health also often contain sensitive or potentially identifying information of individual participants. Thus, care must be taken when they are processed and made available to comply with ethical and regulatory frameworks and informed consent data conditions. To enable and streamline data access for these biomedical datasets, the Global Alliance for Genomics and Health (GA4GH) Data Use and Researcher Identities (DURI) work stream developed and approved the Data Use Ontology (DUO) standard. DUO is a hierarchical vocabulary of human and machine-readable data use terms that consistently and unambiguously represents a dataset's allowable data uses. DUO has been implemented by major international stakeholders such as the Broad and Sanger Institutes and is currently used in annotation of over 200,000 datasets worldwide. Using DUO in data management and access facilitates researchers' discovery and access of relevant datasets. DUO annotations increase the FAIRness of datasets and support data linkages using common data use profiles when integrating the data for secondary analyses. DUO is implemented in the Web Ontology Language (OWL) and, to increase community awareness and engagement, hosted in an open, centralized GitHub repository. DUO, together with the GA4GH Passport standard, offers a new, efficient, and streamlined data authorization and access framework that has enabled increased sharing of biomedical datasets worldwide.

Australian Genomics Murdoch Children's Research Institute Parkville VIC Australia

BBMRI ERIC AT and Masaryk University Brno Czech Republic

Berlin Institute of Health at Charité Universitätsmedizin Berlin Berlin Germany

Bioinformation and DDBJ Center National Institute of Genetics Mishima Japan

Broad Institute of Harvard and the Massachusetts Institute of Technology Cambridge MA USA

Canada's Michael Smith Genome Sciences Centre Vancouver BC Canada

Centre de Regulació Genòmica Barcelona Spain

Centre of Genomics and Policy Department of Human Genetics McGill University Montreal QC Canada

Computational Biology Division IDM Faculty of Health Sciences University of Cape Town Cape Town South Africa

Database Center for Life Science Joint Support Center for Data Science Research Research Organization of Information and Systems Kashiwa Japan

Department of Life Sciences University of Northampton Northampton UK

Division of Human Genetics Faculty of Health Sciences University of Cape Town Cape Town South Africa

ELIXIR Finland CSC IT Center for Science Ltd Espoo Finland

ELIXIR Hub Wellcome Genome Campus Hinxton UK

ELIXIR Luxembourg Luxembourg Centre for Systems Biomedicine University of Luxembourg Belvaux Luxembourg

European Molecular Biology Laboratory European Bioinformatics Institute Hinxton UK

Genomics Coordination Center Department of Genetics University of Groningen University Medical Center Groningen Groningen the Netherlands

Google Cloud Kitchener ON N2H 5G5 Canada

Health Data Research UK Gibbs Building 215 Euston Road London NW1 2BE UK

Laboratoire de Diagnostic Génétique Institut de Génétique Médicale d'Alsace Hôpitaux Universitaires de Strasbourg Strasbourg France

Laboratoire de Génétique Médicale Institut de Génétique Médicale d'Alsace INSERM U1112 Université; de Strasbourg Strasbourg France

McGill Centre for Integrative Neuroscience Montreal Neurological Institute Department of Neurology and Neurosurgery Faculty of Medicine McGill University Montreal QC Canada

Microsoft Research Redmond WA 98052 USA

National Bioscience Database Center Japan Science and Technology Agency Tokyo Japan

National Human Genome Research Institute NIH Bethesda MD USA

Office of Data Sharing National Cancer Institute NIH Rockville MD USA

Okayama University Okayama Japan

Osaka University Osaka Japan

Patient Centered Outcomes Research Institute Washington DC USA

RTI International Research Triangle Park NC USA

Spherical Cow Group Rego Park NY 11374 USA

Tohoku Medical Megabank Organization Tohoku University Sendai Japan

University Health Network Toronto ON Canada

University of Colorado Anschutz Medical Campus Aurora CO USA

University of Leicester Leicester UK

Wellcome Sanger Institute Wellcome Genome Campus Hinxton UK

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