ArticleBiopreservation and biobanking2024
Achieving Procedural Parity in Managing Access to Genomic and Related Health Data: A Global Survey of Data Access Committee Members.
Article in Biopreservation and biobanking, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
9 citing papers in PubMed.
- Navigating data sharing in research.American journal of human genetics · 2026Review
- Characterizing core outcomes of responsible stewardship for human genomic data in the cloud.BMC medical genomics · 2026Article
- When 'More Isn't More': The Normative and Practical Case for Improving Genetic Data Infrastructure.The American journal of bioethics : AJOB · 2025Article
- Data sharing in the PRIMED Consortium: Design, implementation, and recommendations for future policymaking.American journal of human genetics · 2025Review
- Article
- Data access arrangements in genomic research consortia.Scientific reports · 2024Review
- A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access.BMC medical ethics · 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
- The Ethical Data Practices Framework and Its Implications for Data Privacy Relations between the United States and the European Union.The American journal of bioethics : AJOB · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
Data access committees (DACs) are critical players in the data sharing ecosystem. DACs review requests for access to data held in one or more repositories and where specific constraints determine how the data may be used and by whom. Our team surveyed DAC members affiliated with genomic data repositories worldwide to understand standard processes and procedures, operational metrics, bottlenecks, and efficiencies, as well as their perspectives on possible improvements to quality review. We found that DAC operations and systemic issues were common across repositories globally. In general, DAC members endeavored to achieve an appropriate balance of review efficiency, quality, and compliance. Our results suggest a similarly proportionate path forward that helps DACs pursue mutual improvements to efficiency and compliance without sacrificing review quality.
Indexed as
Identifiers
What OpenQuestion holds
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.