Advocacy & Practice Updates — Advocacy & Practice
ASRS Recommends NIH Modify Policy that Would Restrict Sharing Retina Images
This week, ASRS submitted comments to the National Institutes of Health (NIH) opposing proposed changes to the agency’s Controlled-Access Data Policy and Genomic Data Sharing Policy that would classify retinal images as biometric identifiers. In the letter, ASRS cautioned that the proposal misinterprets the risk of patient re-identification from de-identified retinal images and could unintentionally hinder clinical research, medical education, and innovation.
We emphasized that sharing retinal images is fundamental to training physicians, diagnosing rare diseases, and developing emerging technologies such as artificial intelligence tools for detecting eye disease. ASRS urged NIH to revise the policy to allow continued sharing of de-identified retinal images under appropriate privacy safeguards and to work with the medical community to develop a more practical, risk-based approach.
(Published 3.10.26)