Updates to Data Management and Access Practices Under the NIH Genomic Data Sharing Policy

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.

Rethinking Population Descriptors in Genetics and Genomics Studies

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.

Register Today! Implementing the New NIH Data Management and Sharing Policy: Part II – Diving Deeper

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!

Refreshing NIH’s Genomic Data Sharing Policy

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. 

Protecting Participants, Empowering Researchers: Providing Access to Genomic Summary Results

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.