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.
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.
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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!
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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!
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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).
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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.
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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.
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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.
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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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Genomic research produces incredibly large amounts of valuable data, often more than one lab can feasibly interrogate. Every day, genomic sequencing costs decrease, and high-throughput technologies advance, allowing scientists to generate large-scale genomic data faster than before. Thus the sharing of these data not only is practical and efficient, it also maximizes the scientific potential of valuable data. This is why it’s important for you to know about the release of the final NIH Genomic Data Sharing Policy.
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