Cited by 100Research Data Management PracticesEthics in Clinical ResearchData Analysis and Archiving

Data use under the NIH GWAS Data Sharing Policy and future directions

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the National Institutes of Health Genomic Data Sharing Governance Committees·2014·Nature Genetics

Abstract

Dina Paltoo, Laura Lyman Rodriguez, Michael Feolo and colleagues present their analysis of the usefulness and impact of the first seven years of data sharing via the dbGaP repository and announce the extension of data-sharing provisions to other types of research funded by the NIH. In 2007, the US National Institutes of Health (NIH) introduced the Genome-Wide Association Studies (GWAS) Policy and the database of Genotypes and Phenotypes (dbGaP) to facilitate 'controlled' access to GWAS data based on participants' informed consent. dbGaP has provided 2,221 investigators access to 304 studies, resulting in 924 publications and significant scientific advances. Following on this success, the 2014 Genomic Data Sharing Policy will extend the GWAS Policy to additional data types.

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  • A team of researchers posted the whole genome sequence of one strain of HeLa cells online in 2013, which broke no laws or rules because large-scale sharing of genomic data sets is required by many funding sources and journals.

    “Despite heightened scrutiny of these issues, a team of researchers posted the whole genome sequence of one strain of HeLa cells online in 2013. Doing so broke no laws or rules; large-scale sharing of genomic data sets is required by many funding sources (107) and journals to promote replication of findings and further research.”

    From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [107]

    The “Challenges, responses and anticipated growth” section reports publication of HeLa whole-genome sequence data in 2013, and “Submission and use of dbGaP data” says many journals require data sharing. The paper describes NIH data-sharing policies, but does not establish that many funding sources required this release or that posting the HeLa sequence online broke no laws or rules. No page numbers were available in our copy. (LLM, conf=0.85)

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Research works printed but not linked: 10

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Authors
Committees, T. N. I. O. H. G. D. S. G.
Venue
Nature Genetics
Published
2014-09
Volume
46
Issue
9
Pages
934-938
ISSN
  • 1061-4036 (ISSN-L)
  • 1546-1718
OpenAlex
W2041537520
Cited by
100
References
3
Citations by year
2026: 1 · 2025: 3 · 2024: 4 · 2023: 3 · 2022: 7 · 2021: 18 · 2020: 7 · 2019: 6 · 2018: 9 · 2017: 8 · 2016: 16 · 2015: 12 · 2014: 6
FWCI
38.83
Type
journal article
Language
en
Open access
Locations
  • Nature Genetics (publishedVersion, cc-by-nc-sa)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by-nc-sa)
  • PubMed Central (publishedVersion, cc-by-nc-sa)
  • PubMed (publishedVersion)
Funders
National Institutes of Health (Z99 LM999999)
Topics
  • Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Social Sciences › Sociology and Political Science › Data Analysis and Archiving
Keywords
dbGaP, genome-wide association study, genomic data sharing, informed consent, research data reuse, NIH-funded research
MeSH terms
Humans, National Institutes of Health (U.S.), United States, Databases, Genetic, Information Dissemination, Genome-Wide Association Study

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