RFK Jr.'s Proposed Autism Registry Faces Widespread Criticism Over Privacy and Ethical Concerns

Health Secretary Robert F. Kennedy Jr.’s reported plan to create a federal registry tracking Americans with autism has sparked significant backlash from advocacy groups, medical experts, and political figures. The proposal, which would compile data from pharmacy records, insurer claims, and Veterans Affairs systems, has drawn comparisons to eugenics-era tracking and raised alarms about privacy violations and potential misuse¹.

Controversial Remarks and Policy Proposal

Kennedy’s comments in April 2025 referring to autism as an “epidemic” and suggesting many diagnosed individuals would never contribute to society ignited immediate criticism². While he later clarified he was referring only to severe cases, his subsequent policy announcement of an autism registry amplified concerns. The registry would be managed by David Geier, a controversial figure known for using puberty blockers on autistic children, further fueling opposition³.

Medical organizations have challenged Kennedy’s framing of autism as an epidemic. CDC data shows the rising diagnosis rate (1 in 31 U.S. children as of 2022) reflects improved awareness rather than an actual increase in cases⁴. The World Health Organization emphasizes many autistic individuals live independently and maintain employment, contradicting Kennedy’s characterization⁵.

Backlash from Advocacy Groups

The autistic community and disability rights organizations have been particularly vocal in their opposition. Actress Holly Robinson Peete highlighted her autistic son’s employment with the LA Dodgers as a direct rebuttal to Kennedy’s claims about productivity⁶. The Autistic Self Advocacy Network called the remarks “disgusting” and emphasized the diversity of the autism spectrum⁷.

Privacy advocates have raised concerns about the registry’s potential to violate HIPAA protections. Comparisons have been drawn to historical abuses of medical tracking systems, with critics warning the data could be used to restrict services or justify budget cuts to autism programs⁸. Kennedy’s simultaneous proposal to reduce Medicaid funding has intensified these fears⁹.

Political and Family Reactions

The controversy has extended into political circles, with Democratic Representative Maxwell Frost calling the remarks “disrespectful” and stigmatizing¹⁰. Notably, Kennedy’s cousin Caroline Kennedy publicly opposed his Health and Human Services nomination over what she called “dangerous” views on autism¹¹.

The situation presents a stark contrast to the legacy of Kennedy’s aunt, Eunice Kennedy Shriver, who founded the Special Olympics and championed disability rights¹². This family connection has drawn additional scrutiny to the secretary’s positions on neurodiversity and disability services.

Ongoing Developments

Kennedy has pledged the Health and Human Services department will identify autism’s “cause” by September 2025, despite scientific consensus that no single cause exists¹³. He has also directed the CDC to investigate vaccines’ potential link to autism, revisiting a long-debunked theory that has been central to his public health advocacy¹⁴.

As the debate continues, the registry proposal faces bipartisan scrutiny in Congress. Privacy experts warn the tracking system could set a dangerous precedent for medical surveillance, while advocates emphasize the importance of supporting rather than stigmatizing neurodiverse individuals.