September 23, 2024
NIH has issued an implementation update for data management and access practices under the Genomic Data Sharing (GDS) Policy which introduces updated security standards for Approved Users of controlled-access data shared under the NIH GDS Policy and for repositories and/or systems storing or providing access to these data. The updates will take effect on January 25, 2025.
November 7, 2023
We’ve updated our FAQs to address questions regarding concerns when sharing scientific data that could be the subject of a patent application, or that were generated under SBIR/STTR awards.
September 28, 2023
Assuming that biological or genetic differences relate directly to racial or ethnic categories can lead to false scientific conclusions and perpetuate bias. Misuse of population descriptors has harmed marginalized groups and promoted scientific racism. These limitations in existing population descriptors in genetics and genomics led 14 NIH Institutes, Centers, and Offices to sponsor the National Academies of Science, Engineering, and Medicine (NASEM) to establish an interdisciplinary committee of experts and explore the issue.
October 7, 2022
The January 25, 2023 implementation date for the new Data Management and Sharing (DMS) Policy is right around the corner. Now is a great time to explore the many resources and materials to help the community prepare for the new policy!
September 1, 2022
Mark your calendar for Part II of our webinar series on the new Data Management and Sharing Policy! Our September 22nd session will take a deeper dive into the details of the policy including information such as considerations for privacy protections for sharing human participant data, when working with American Indian and Alaska Native communities, how it interacts with the Genomic Data Sharing Policy, and more!
August 31, 2022
In an effort to reduce burden, NIH will no longer request separate sharing plans for research subject to both the NIH Genomic Data Sharing Policy (GDS Policy) and the NIH Policy for Data Management and Sharing (DMS Policy).
August 5, 2022
As we work towards the January 25, 2023 effective date of the new NIH Data Management and Sharing (DMS) Policy, we continue to develop resources and implementation information to help the community prepare. We will be supporting you with additional resources and guidance through the change.
April 5, 2022
I am very pleased to announce the availability of a new website on Scientific Data Sharing. Whether you are involved in an NIH-funded project and want to understand which sharing policies apply to your research and how to comply, or you are a researcher looking to access scientific data from NIH-affiliated repositories, this site is for you.
December 3, 2021
NIH released a “Request for Information on Proposed Updates and Long-Term Considerations for the NIH Genomic Data Sharing (GDS) Policy.” This is your opportunity to help us shape the future of the GDS Policy. Stakeholder input is the key to ensuring that NIH strikes the right balance when updating the GDS Policy. Comments will be accepted until February 28, 2022.
November 2, 2018
Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic summary results for most of the studies we support in order to advance health or further research purposes. These summary results are importantly distinct from other genomic research data, most notably in that they do not include individual-level information. Instead, these results come from analyzing pooled genomic data from multiple individuals together to generate a statistical result for the entire dataset. Such information can be a powerful tool for helping researchers determine which genomic variants potentially contribute to a disease or disorder.
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