On May 12, 2025, the Center for Democracy & Technology (CDT) collaborated with 80 other civil rights organizations to express concerns regarding a proposal by the National Institute of Health (NIH). The initiative involves compiling data from federal and commercial sources to create an autism "registry."
The letter addressed to Secretary Robert F. Kennedy, Jr. highlights the issue of collecting sensitive health-related data without proper consent or safeguards. This remains a concern despite assurances from the Department of Health and Human Services that it will not use the data to establish a registry. The letter urges HHS and NIH to collaborate with the civil rights community, especially individuals with disabilities and autistic persons, to ensure privacy measures are in place for any data collection or usage.
There is a history of apprehension within the disability community about federal government efforts to compile data on disability status. It is emphasized that any data collection or research initiatives should involve consent and input from autistic, neurodivergent, and disabled individuals.
Further details can be found in communications from the ACLU on this matter.