ArticleGenome medicine2014
Data sharing policy design for consortia: challenges for sustainability.
Article in Genome medicine, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 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
24 citing papers in PubMed, 58 citations in OpenAlex.
- Characterizing core outcomes of responsible stewardship for human genomic data in the cloud.BMC medical genomics · 2026Article
- Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa.PloS one · 2024Article
- Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.BMC medical ethics · 2023Article
- FAIR, ethical, and coordinated data sharing for COVID-19 response: a scoping review and cross-sectional survey of COVID-19 data sharing platforms and registries.The Lancet. Digital health · 2023Article
- A one-size-fits-all approach to data-sharing will not suffice in lifecourse research: a grounded theory study of data-sharing from the perspective of participants in a 50-year-old lifecourse study about health and development.BMC medical research methodology · 2023Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe.Life sciences, society and policy · 2020Article
- Data Access Committees.BMC medical ethics · 2020Article
- The Data Tags Suite (DATS) model for discovering data access and use requirements.GigaScience · 2020Article
- 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
- A beginner's guide to data stewardship and data sharing.Spinal cord · 2019Review
- Ethical concerns on sharing genomic data including patients' family members.BMC medical ethics · 2018Article
- The challenges of the expanded availability of genomic information: an agenda-setting paper.Journal of community genetics · 2018Article
- Including all voices in international data-sharing governance.Human genomics · 2018Article
- Balancing the local and the universal in maintaining ethical access to a genomics biobank.BMC medical ethics · 2017Review
- The European General Data Protection Regulation: challenges and considerations for iPSC researchers and biobanks.Regenerative medicine · 2017Article
- Expanding Access to Large-Scale Genomic Data While Promoting Privacy: A Game Theoretic Approach.American journal of human genetics · 2017Article
- Registered access: a 'Triple-A' approach.European journal of human genetics : EJHG · 2016Article
- "You want the right amount of oversight": interviews with data access committee members and experts on genomic data access.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Analysis of five years of controlled access and data sharing compliance at the International Cancer Genome Consortium.Nature genetics · 2016Article
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 at 2 institutions in 1 country.
Funding
Abstract
The field of human genomics has led advances in the sharing of data with a view to facilitating translation of research into innovations for human health. This change in scientific practice has been implemented through new policy developed by many principal investigators, project managers and funders, which has ultimately led to new forms of practice and innovative governance models for data sharing. Here, we examine the development of the governance of data sharing in genomics, and explore some of the key challenges associated with the design and implementation of these policies. We examine how the incremental nature of policy design, the perennial problem of consent, the gridlock caused by multiple and overlapping access systems, the administrative burden and the problems with incentives and acknowledgment all have an impact on the potential for data sharing to be maximized. We conclude by proposing ways in which the scientific community can address these problems, to improve the sustainability of data sharing into the future.
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.