Search Results
Event
On May 19-20, 2016, the National Human Genome Research Institute (NHGRI) hosted a two-day workshop where participants were asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users.
… Update Workshop on Establishing a Central Resource of Data from Genome Sequencing Projects Report Resolving … asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users. … Workshop on Sharing Aggregate Data … asked to weigh the benefits and risks of sharing aggregate genomic data with secondary users. …
News Release
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy.
… Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic … Access to Genomic Summary Results In 2008, researchers raised concerns … (if the researcher had access to the individual's genomic data). In response, we decided that while we assess the state …
About NHGRI
The Genomic Data Science Working Group facilitates engagement of the National Advisory Council for Human Genome Research on genomics and data science issues.
… The NHGRI Genomic Data Science Working Group facilitates a deeper engagement of … on complex issues at the interface between genomics and data science. … The NHGRI Genomic Data Science Working Group was created in 2017 as a … Genomic Data Science Working Group … The Genomic Data Science Working Group facilitates engagement of …
News Release
NIH released a Request for Information seeking comments on the data submission and access process for dbGaP.
… Human Genome Research Institute, we believe that broadly sharing research data will result in maximum public benefit, and we're committed to providing researchers with access to genomic data. The National Institutes of Health (NIH) Genomic … a central portal to submit, locate and request access to genomic and associated phenotypic data. It is a valuable and …
Office of Genomic Data Science
NHGRI is committed to increasing the availability of educational and research opportunities in computational genomics and data science (CGDS).
… and research opportunities in computational genomics and data science (CGDS). Through recent funding announcements for … cloud workspaces, tools, and services available on NHGRI's Genomic Data Science Analysis, Visualization, and Informatics … based CGDS analyses. Together, the Hub, Sites, and NHGRI’s Genomic Data Science Community Network will create a …
Data Sharing Policies
Sample informed consent language, aligned with each of the informational elements of consent for genomic data sharing (GDS) outlined by NIH as important to convey, in language understandable to prospective participants.
… to Informational Elements Outlined by NIH Guidance  Genomic and phenotypic data, and any other data relevant for the study (such as … encourages the broadest appropriate future use and sharing of genomic and phenotypic data.  Example 1: Consent … protection will be implemented.  Example 1  Your genomic data and health information will not be labeled with …
Staff
Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome Research Institute (NHGRI)
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… Elena Ghanaim is the Policy Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome … Advisor for Data Science and Sharing within the Office of Genomic Data Science (OGDS) at the National Human Genome …
Research at NHGRI
Families Sharing Health Assessment and Risk Evaluation (SHARE) helps you and your family learn how your family health history affects your risk for diseases.
… on recruiting and engaging Black men in a community-based genomic education program . BMC Public Health 25, 805 (2025). … Families Sharing Health Assessment and Risk Evaluation (SHARE) helps … Families Sharing Health Assessment and Risk Evaluation (SHARE) helps … Families Sharing Health Assessment and Risk Evaluation (SHARE) helps …
About NHGRI
A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at the National Human Genome Research Institute.
… A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at the … A list of policies and guidance related to funding, genomic data sharing, website operations and our work environment at … Website Accessibility, NIH Policy, Genomic Data Sharing, NHGRI Policy, NIH Website Policy, …
The Genomics Landscape
In the February 2, 2023 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., talks about the new NIH Data Management and Sharing (DMS) Policy and how it emphasizes the importance of good data management practices.
… Genome-wide data from medieval German Jews show that the Ashkenazi …  The effective date for the new NIH Data Management and Sharing (DMS) Policy occurred last month … them. Given the strong commitment of NHGRI researchers to genomic data sharing, the institute believes that the …