Protecting Human Genomic Data when Developing Generative Artificial Intelligence Tools and Applications

NIH has issued a Guide notice clarifying how to protect human genomic data obtained from NIH controlled-access repositories when using and developing generative artificial intelligence (AI) models consistent with the Genomic Data Sharing (GDS) Policy.

The Guide notice, "Protecting Human Genomic Data when Developing Generative Artificial Intelligence Tools and Applications," includes

1) a reminder that the GDS Policy does not allow users to share controlled-access data or their data derivatives with unauthorized users, including public generative AI tools, and

2) prohibits sharing of generative AI models and their parameters trained on human genomic data obtained from NIH controlled-access data repositories.

NIH intends to release future guidance outlining the responsible use and sharing of generative AI models based on controlled-access data. For additional information on using controlled-access data responsibly, see the principles described in Using Genomic Data Responsibly Under the NIH Genomic Data Sharing Policy and the AI in Research: Policy Considerations and Guidance.

Full notice:
NOT-OD-25-081
March 28, 2025

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