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Policies and Guidance
Broad data sharing promotes maximum public benefit from federally funded genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely accessible data repositories. These repositories may be open access (unrestricted) or, if more appropriate, controlled access.
… Broad data sharing promotes maximum public benefit from federally funded … genomics research. NHGRI supports the broadest appropriate genomic data sharing with timely data release through widely … technologies. Data pertinent to the interpretation of genomic data — such as associated phenotype data (e.g., …
Data Sharing
The NHGRI Data Sharing Governance Committee is responsible for the activities necessary for the Institute to implement and maintain NIH and NHGRI data sharing policies.
… The NHGRI Data Sharing Governance Committee is responsible for the … for the Institute to implement and maintain NIH and NHGRI data sharing policies. These activities include:  Promoting … Roster  Erin M. Ramos, Ph.D., M.P.H. Co-chair Division of Genomic Medicine  Barbara Thomas, Ph.D. (DAC …
News Release
NIH issues a final Genomic Data Sharing policy to speed the translation of data into knowledge, improve health and protect patient privacy.
… The National Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to … large-scale human and non-human projects that generate genomic data. This includes research conducted with the support of … Promoting Data Sharing …
The Genomics Landscape
In 2022, The Genomics Landscape spotlighted genomic data sharing each month in a series of entries. This page contains a collection of each of those entries.
… Landscape Originally published: January 13, 2022  Data sharing is central to the field of genomics. Both human and non-human genomic data have been widely shared through public data … used resources for studying the relationship between genomic variation and gene expression. Because GTEx data can …
Events
Data sharing has been a central tenet of the field of genomics since the Human Genome Project.
… Data sharing has been a central tenet of the field of genomics … Human Genome Project. While many recognize that sharing genomic data is critical to scientific progress, considerable … privacy and other concerns have been raised over sharing genomic data too broadly and openly. It is immensely …
Event
On November 30th, 2020, NHGRI convened a virtual meeting for journal editors and NHGRI/NIH staff to discuss genomic data sharing.
… meeting for journal editors and NHGRI/NIH staff to discuss genomic data sharing. The goal of this meeting was to learn more about the … Scientific Journals and Genomic Data Sharing … meeting for journal editors and NHGRI/NIH staff to discuss genomic data sharing. …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the GDS policy's … NIH is seeking public feedback regarding the proposed data management update and encourages comments from all …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… registration in dbGaP is required for large-scale human genomic studies, including those submitting data to AnVIL and studies with an Alternative Data Sharing Plan.  Follow the standard process outlined in How … of scientific data, with the following exception: for genomic data, NHGRI expects non-human genomic data that are …
Policies and Guidance
Frequently Asked Questions regarding the NHGRI's Metadata and Phenotypic Data Sharing Expectations.
… Data sharing is an important aspect of the research endeavor that ensures maximal use of participants’ data for scientific discovery, rigor and reproducibility, and more. NHGRI-funded researchers subject to NIH’s data sharing policies are expected to share comprehensive metadata …
News Release
The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers should obtain, share and access genomic data from human and non-human sources. As a leader in genomics, including relevant policy development and implementation, the National Human Genome Research Institute (NHGRI) encourages data sharing practices that go beyond the NIH expectations.
… The National Institutes of Health (NIH) Genomic Data Sharing Policy includes expectations for how researchers … require explicit consent for future research use and broad data sharing of all genomic data derived from human sources, such as specimens … NHGRI is committed to the promotion of forward-thinking genomic data-sharing processes, with a clear understanding of …