ArticleCell genomics2021
Empirical validation of an automated approach to data use oversight.
Article in Cell genomics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
20 citing papers in PubMed.
- Characterizing core outcomes of responsible stewardship for human genomic data in the cloud.BMC medical genomics · 2026Article
- Toward ethical provenance tracking: The GA4GH model data access agreement (DAA).Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- Article
- A call to action to scale up research and clinical genomic data sharing.Nature reviews. Genetics · 2025Review
- Genomic privacy and security in the era of artificial intelligence and quantum computing.Discover computing · 2025Review
- A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access.BMC medical ethics · 2024Article
- Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members.Biopreservation and biobanking · 2024Article
- Investigating the Roles and Responsibilities of Institutional Signing Officials After Data Sharing Policy Reform for Federally Funded Research in the United States: National Survey.JMIR formative research · 2024Article
- "Be sustainable": EOSC-Life recommendations for implementation of FAIR principles in life science data handling.The EMBO journal · 2023Article
- Aligning NIH's existing data use restrictions to the GA4GH DUO standard.Cell genomics · 2023Review
- Federated Analysis for Privacy-Preserving Data Sharing: A Technical and Legal Primer.Annual review of genomics and human genetics · 2023Review
- Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.Neuroinformatics · 2023Article
- Review
- Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.Biopreservation and biobanking · 2022Article
- Automating Justice: An Ethical Responsibility of Computational Bioethics.The American journal of bioethics : AJOB · 2022Article
- Inverting the model of genomics data sharing with the NHGRI Genomic Data Science Analysis, Visualization, and Informatics Lab-space.Cell genomics · 2022Article
- GA4GH Passport standard for digital identity and access permissions.Cell genomics · 2021Article
- GA4GH: International policies and standards for data sharing across genomic research and healthcare.Cell genomics · 2021Article
- I can drive in Iceland: Enabling international joint analyses.Cell genomics · 2021Article
- The Data Use Ontology to streamline responsible access to human biomedical datasets.Cell genomics · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
The current paradigm for data use oversight of biomedical datasets is onerous, extending the timescale and resources needed to obtain access for secondary analyses, thus hindering scientific discovery. For a researcher to utilize a controlled-access dataset, a data access committee must review her research plans to determine whether they are consistent with the data use limitations (DULs) specified by the informed consent form. The newly created GA4GH data use ontology (DUO) holds the potential to streamline this process by making data use oversight computable. Here, we describe an open-source software platform, the Data Use Oversight System (DUOS), that connects with DUO terminology to enable automated data use oversight. We analyze dbGaP data acquired since 2006, finding an exponential increase in data access requests, which will not be sustainable with current manual oversight review. We perform an empirical evaluation of DUOS and DUO on selected datasets from the Broad Institute's data repository. We were able to structure 118/123 of the evaluated DULs (96%) and 52/52 (100%) of research proposals using DUO terminology, and we find that DUOS' automated data access adjudication in all cases agreed with the DAC manual review. This first empirical evaluation of the feasibility of automated data use oversight demonstrates comparable accuracy to human-based data access oversight in real-world data governance.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.