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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.
… primary study, if consistent with study design. When the policy applies NHGRI encourages sharing of all data types. However, at this time the NIH GDS Policy and NHGRI implementation plans apply particularly to … with other data sets. Projects that are subject to the GDS Policy NHGRI finds value in and encourages the sharing of …
Profile
After 50 years of federal service, Dr. Graham reflects on her contributions to the scientific community and the future of the genomics workforce.
… contributions that Dr. Graham has made in over 50 years of federal service and over 30 years at NHGRI, part of the … Video … Bettie Graham retires after over 50 years of federal service … After 50 years of federal service, Dr. Graham reflects on her contributions to …
Administrative
NHGRI branch responsible for policy development and analysis related to advances in genomics research.
… The Policy and Program Analysis Branch (PPAB) of the Division of Genomics and Society conducts policy development and analysis that enables the National … to pursue its mission. … PPAB liaises with Congress, federal agencies, grantees and other external stakeholders, …
About Genomics
NHGRI considers the ethical, legal and social aspect of genomics research in our work, including these key policy issues
… our work, including these key issues. … Related Content … Policy Issues in Genomics … NHGRI considers the ethical, … of genomics research in our work, including these key policy issues. … NHGRI considers the ethical, legal and … of genomics research in our work, including these key policy issues … About Genomics …
The Genomics Landscape
In the May 5, 2022 edition of The Genomics Landscape, NHGRI Director, Eric Green, M.D., Ph.D., pays tribute to one of NHGRI’s founding staff members and current leaders, Bettie Graham, Ph.D., as she reached a truly remarkable milestone: 50 years of service in the federal government.
… data? The upcoming NIH Data Management and Sharing Policy (which will become effective on January 23, 2023) also … a truly remarkable milestone: 50 years of service in the federal government. Bettie has been a member of the NHGRI … impressive (totaling well beyond her number of years of federal service!). For example, she serves as NHGRI’s …
The Genomics Landscape
In the December 2023 edition of The Genomics Landscape, NHGRI Director Eric Green, looks back on Bettie Graham's 50 years of federal service and as a champion for diversity in the genomics workforce, as she retires at the end of 2023.
… February 2, 2024. The Continuing Resolution allows the federal government generally, and NHGRI specifically, to … … Bettie Graham retires after more than 50 years of federal service … NHGRI funds research centers to champion a … Issue … Bettie Graham retires after more than 50 years of federal service … In the December 2023 edition of The …
FAQ
Frequently asked questions from the May 23, 2023 informational webinar, ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… define genomic data as an identifier. However, NIH has policy protections in place to mitigate the risk of … risks to participants, including the Genomic Data Sharing Policy and the NIH Policy for Issuing Certificates of Confidentiality . … What …
Educational Resources
The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate against individuals on the basis of their genetic profiles in regard to health insurance and employment.
… … The Genetic Information Nondiscrimination Act (GINA) is federal legislation that makes it unlawful to discriminate … … Genetic Information Nondiscrimination Act, GINA, Federal Legislation, Ethics, Genetic Information, Healthcare … Information Nondiscrimination Act (abbreviated GINA) is federal legislation in the United States that protects …
Event
On May 23, 2023, NHGRI will host a webinar: ELSI Research and the New NIH Data Management and Sharing (DMS) Policy.
… topics: Overview of the NIH Data Sharing Management Policy Application of the DMS Policy to ELSI Research Data sharing templates and resources … elsi@mail.nih.gov . … NIH Data Sharing and Management Policy NHGRI’s Data Sharing Policies and Expectations NIH …
Policies and Guidance
A webpage with information and associated FAQs that describe various expectations for data sharing that are specific to NHGRI-supported studies.
… non-human genomic data that are subject to the NIH GDS Policy to be submitted and released on the same timeline as … NHGRI data sharing policies. For general NIH data sharing policy information, please visit NIH's Scientific Data … . … Note: The NIH Data Management and Sharing (DMS) Policy ( NOT-OD-21-013 ) went into effect on January 25, …