ArticleGenetics in medicine : official journal of the American College of Medical Genetics2016
"You want the right amount of oversight": interviews with data access committee members and experts on genomic data access.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 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
- Exploring Metadata Catalogs in Health Care Data Ecosystems: Taxonomy Development Study.JMIR formative research · 2025Article
- Ethical and social reflections on the proposed European Health Data Space.European journal of human genetics : EJHG · 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
- Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum.GigaScience · 2024Article
- Artificial intelligence and medical research databases: ethical review by data access committees.BMC medical ethics · 2023Article
- Partnering with First Nations in Northern British Columbia Canada to Reduce Inequity in Access to Genomic Research.International journal of environmental research and public health · 2023Article
- Leveraging Algorithms to Improve Decision-Making Workflows for Genomic Data Access and Management.Biopreservation and biobanking · 2022Article
- Religious Perspectives on Precision Medicine in Singapore.Asian bioethics review · 2021Article
- Is useful research data usually shared? An investigation of genome-wide association study summary statistics.PloS one · 2020Article
- Big Data and Public-Private Partnerships in Healthcare and Research: The Application of an Ethics Framework for Big Data in Health and Research.Asian bioethics review · 2019Article
- Sharing data for future research-engaging participants' views about data governance beyond the original project: a DIRECT Study.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Registered access: a 'Triple-A' approach.European journal of human genetics : EJHG · 2016Article
- Who should have access to genomic data and how should they be held accountable? Perspectives of Data Access Committee members and experts.European journal of human genetics : EJHG · 2016Article
- The role of an ethics advisory committee in data science research in sub-Saharan Africa.South African journal of scienceArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeGenomic data sharing is vital for optimizing the use of public-funded research data. Data access committees (DACs) have been introduced as a core component of governance in controlled-access models. However, the tasks, structure, and functionality of DACs often remain unstudied. This article investigates the role and adequacy of DACs in access reviews from the perspective of DAC members and experts.
methodsTwenty semi-structured interviews were conducted with both DAC members engaged in genomic data sharing via controlled-access databases and experts in the field.
resultsThe respondents indicated that protecting the privacy of data subjects along with recognition of data producers' efforts are the main underlying reasons of access review and the controlled-access model. In reviewing the ethical basis and the scientific aspects of access requests, tools and mechanisms such as consent forms, data access agreements, and guidelines have been used. Nevertheless, DAC members and experts identified shortcomings associated with current approaches that may adversely impact the effectiveness and efficiency of access review.
conclusionThe identified shortcomings of current approaches to access review could be addressed via complementary mechanisms and alternative models of data sharing to facilitate access to data sets in a responsible fashion.Genet Med 18 9, 892-897.
Indexed as
Identifiers
26795589What 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.