Patient and participant consent forms often use different language to describe how generated data can be used and reused. The lack of standard terms and definitions to describe permitted uses of data makes it difficult for data access committees (DACs) to confidently and quickly grant researchers access to data. Developed by the GA4GH Data Use & Researcher Identities (DURI) Work Stream, the Data Use Ontology (DUO) provides a standard set of terms that can be used to tag datasets with use permissions, aiding researchers in discovering data and facilitating DAC decisions in the data access process.

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Benefits
- Allows data to be tagged with consistently defined, computer-readable use permissions and optional modifiers
- Enables tagged data to be more easily discoverable and accessible
- Streamlines the process of identifying appropriate uses and users of data
Target users
Researchers, clinicians, data generators, data access committees, and data protection authorities
| Title | Related Driver Projects and Organisations |
|---|---|
| All of Us Researcher Workbench | All of Us Research Program |
| Australian Genomics Data Management Systems | Australian Genomics |
| BioBank Japan (BBJ) | Japan Agency for Medical Research and Development (AMED) |
| CanDIG V2 | Canadian Distributed Infrastructure for Genomics (CanDIG) |
| ELIXIR European Genome-phenome Archive (EGA) | European Genome-phenome Archive (EGA) |
| ELIXIR-Beacon | ELIXIR Beacon |
| EpiShare Platform | EpiShare |
| Federated EGA | European Genome-phenome Archive (EGA), EMBL's European Bioinformatics Institute (EBI), Centre for Genomic Regulation |
| H3ABionet | Human Heredity and Health in Africa (H3Africa) |
| Human Cell Atlas (HCA) Data Portal | Human Cell Atlas |
| Medical Genomics Japan Variant Database (MGeND) | Japan Agency for Medical Research and Development (AMED) |
| NCPI Interoperability Projects and partners | NIH Cloud Platform Interoperability (NCPI) effort |
| NHLBI TOPMed BioData Catalyst | Trans-Omics for Precision Medicine (TOPMed) |
| TogoVar | GEnome Medical alliance Japan (GEM Japan) |
| Tohoku Medical Megabank Project (ToMMo) | Japan Agency for Medical Research and Development (AMED) |
Publications
Documents
| Date | Title |
|---|---|
| 14 September 2023 | Code of Ethics and Community Conduct (CECC) |
| 14 December 2020 | Meeting minutes: DURI — Data Use (2021 to 2022) |
Videos
| Date | Title | |
|---|---|---|
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26 May 2021 | DUO webinar (Genomics in Health Implementation Forum) |
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27 September 2019 | Using the GA4GH toolkit: Data Use Ontology for automating access to human genomic data |
Contributors
Don't see your name..?
Get in touch- Mélanie CourtotData Use Ontology (DUO) LeadOntario Institute for Cancer Research (OICR), Toronto, Canada
- Jonathan LawsonData Use Ontology (DUO) LeadBroad Institute of MIT and Harvard, Cambridge, US
- Greg RushtonData Use Ontology (DUO) LeadBroad Institute of MIT and Harvard, Cambridge, US
- Dixie BakerMartin, Blanck and Associates
- Michael BaudisUniversity of Zurich, Zurich
- Guillaume BourqueMcGill University / Université McGill, Montréal, Canada
- Sarion BowersWellcome Sanger Institute (WSI), Hinxton, UK
- Rebecca BoylesRTI International
- Michael BrudnoUniversity Health Network, Toronto, Canada
- Tony BurdettEMBL's European Bioinformatics Institute (EBI), Hinxton, UK
- Moran CabiliFoundation Medicine, Inc., Cambridge
- Shu Hui ChenNIH National Heart, Lung, and Blood Institute (NHLBI), Bethesda
- Hayley ClissoldWellcome Sanger Institute (WSI), Hinxton, UK
- Megan DoerrSage Bionetworks, Seattle
- Marc FiumeDNAstack, Toronto
- Mallory FreebergEMBL's European Bioinformatics Institute (EBI), Hinxton, UK
- Robert FreimuthMayo Clinic, Rochester
- Jaime Guidry AuvilNIH National Cancer Institute (NCI), Bethesda
- Melissa HaendelUNC School of Medicine
- Francis JeansonDatadex
- Giselle KerryELIXIR, International
- Melissa KonopkoELIXIR, International
- Nancy MahFraunhofer Institute for Biomedical Engineering
- Alice MannWellcome Sanger Institute (WSI), Hinxton, UK
- Mizuki MoritaOkayama University
- Nicola MulderUniversity of Cape Town, Cape Town
- Jean MullerLaboratoire de génétique médicale (UMR_S 1112)
- Heimo MuollerMedical Univerisity Graz
- Satoshi NagaieTohoku University Tohoku, Medical Megabank Organization, Sendai
- Jamal NasirUniversity of Northampton, Northampton
- Tommi NyrönenCSC – IT CENTER FOR SCIENCE
- Soichi OgishimaTohoku University Tohoku, Medical Megabank Organization, Sendai
- Laura PaglioneSpherical Cow Group, New York, NY, USA
- Dina PaltooNIH National Heart, Lung, and Blood Institute (NHLBI), Bethesda
- Helen ParkinsonEMBL's European Bioinformatics Institute (EBI), Hinxton, UK
- Kathy ReinoldIndependent Contributor
- Laura Lyman RodriguezPatient-Centered Outcomes Research Institute (PCORI)
- Dylan SpaldingCSC – IT CENTER FOR SCIENCE
- Morris SwertzUniversity Medical Center Groningen
- Adrian ThorogoodTerry Fox Research Institute, Vancouver, Canada
- Ilia TulchinskyAlphabet
- Susheel VarmaInformation Commissioner's Office
- Vanessa Vogel-FarleyRARE-X, Aliso Viejo, California
- Craig VoisinGoogle LLC, Mountain View
- Chisato YamasakiNational Institute of Biomedical Innovation, Health and Nutrition (NIBIOHN)
- Christina YungOntario Institute for Cancer Research (OICR), Toronto, Canada, Indoc Research, Toronto
Driver Projects
| Title | Thematic Area |
|---|---|
| All of Us Research Program | Rare Disease Cancer Complex Traits |
| Australian Genomics | Rare Disease Cancer Complex Traits |
| Canadian Distributed Infrastructure for Genomics (CanDIG) | Rare Disease Cancer Complex Traits Basic Biology |
| ELIXIR Beacon | Rare Disease Cancer Complex Traits Basic Biology |
| EpiShare | Basic Biology |
| Trans-Omics for Precision Medicine (TOPMed) | Rare Disease Complex Traits Basic Biology |
| Human Cell Atlas | Rare Disease Cancer Complex Traits Basic Biology |
| Human Heredity and Health in Africa (H3Africa) | Complex Traits Basic Biology |
| GEnome Medical alliance Japan (GEM Japan) | Rare Disease Cancer Complex Traits Basic Biology |
| European Genome-phenome Archive (EGA) | Rare Disease Cancer Complex Traits Basic Biology |

