Gearing Up for 2023 Part II: Implementing the NIH Data Management and Sharing Policy

May 12, 2022

I should note that when we started to receive comments on what was to become the NIH DMS Policy, one thing in particular stood out to us. Many commentors told us it would be helpful to have clear information on how to protect the privacy and respect the autonomy of participants when sharing data. Now, we all know that cliffhangers build anticipation, so without further delay, I want to share with you some of the tools NIH has been working on to answer that call.

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.

When to Share or When Not to Share, that is the Privacy Question

June 29, 2018

Looking for a grant award you heard about? Go here! Perhaps how many trainees NIH supported? You got it! Research spending on a certain disease? Done! Comparing NIH to another federal funder? Look no further! As you can see, NIH shares a quite diverse array of data associated with our funded grants in a transparent way. But, that does not mean we share everything.