Tell governors nationwide to protect the medical data of disabled Americans from RFK Jr.'s dangerous "autism registry" proposal.
Dear MoveOn member,
Health and Human Services Secretary Robert F. Kennedy Jr. wants to implement a national registry to track every American diagnosed with autism. This is a dangerous overreach that threatens the data and privacy of millions of Americans, with no clear scientific benefit.1
The National Institutes of Health—tasked with collecting private medical data—has yet to clarify if data will be scrubbed to protect patient anonymity or if patients can opt out.2
Already, in Illinois, Governor JB Pritzker signed an executive order blocking state agencies from sharing autism-related data beyond the state without consent.3
Now we need other governors to follow suit and prevent the federal government from abusing critical medical information in its crusade against autistic and disabled people. Add your name to call on governors nationwide to follow Pritzker's lead.
RFK Jr. has spouted conspiracy theories about autism for years, spreading dangerous lies about links between autism and vaccines and calling autism a "preventable disease," which advocates say is both unfounded and stigmatizing.4
Most recently, he's made promises to "find the cause" of autism by September of this year—but experts say that the lack of clarity around how medical data will be collected, shared, maintained, and tested for accuracy raises serious red flags.
We need every governor to be vigilant in protecting the privacy, rights, and safety of autistic and disabled Americans from RFK Jr.'s questionable and dangerous overreach. Will you sign the petition?
During the first four months of 2025, the NIH reduced funding for autism-related research by an estimated $31 million.5 And now, rather than including the communities most impacted by RFK Jr.'s proposal, federal health agencies are excluding autistic people and those with disabilities from the conversation, deepening a sense of mistrust.6
The executive director of the Autistic Self Advocacy Network, Colin Killick, further explains: "We continue to advocate and support research into autism that autistic people want conducted, but it is critical that autistic people's private data not be shared without our consent."7
Will you add your name urging governors to prevent people's private health information from being shared without their consent?
RFK Jr.'s campaign to amass private data sets a dangerous precedent that threatens the rights of every single American. Notably, Illinois officials have expressed concern about the civil rights risks tied to federal efforts to collect personal information from electronic sources, including devices like smart watches.8
And experts warn that NIH's approach to data collection is a potential waste of funding dollars, as it misses key genetic components required for meaningful research.9
The privacy and rights of millions of Americans are at risk—sign the petition calling on governors everywhere to act now.
Thanks for all you do.
–Toni, Alexis, Aliya, Corinne, and the rest of the team
Sources:
1. "What to know about RFK Jr.'s autism registry plan," Axios, April 23, 2025
https://www.axios.com/2025/04/23/autism-registry-rfk-nih
2. Ibid.
3. "Illinois restricts feds' access to autism data," Axios, May 13, 2025
https://www.axios.com/local/chicago/2025/05/13/pritzker-autism-illinois-data-executive-order
4. "What to know about RFK Jr.'s autism registry plan," Axios, April 23, 2025
https://www.axios.com/2025/04/23/autism-registry-rfk-nih
5. "Exclusive: Trump administration defunds autism research in DEI and 'gender ideology' purge," Reuters, May 16, 2025
https://www.reuters.com/business/healthcare-pharmaceuticals/trump-administration-cut-autism-related-research-by-26-so-far-2025-2025-05-16/
6. "Letter to HHS Secretary Robert F. Kennedy, Jr. on Concerns with Proposed Autism Registry," ACLU, May 12, 2025
https://www.aclu.org/documents/letter-to-hhs-secretary-robert-f-kennedy-jr-on-concerns-with-proposed-autism-registry
7. "Disability Rights and Privacy Advocates Raise Concerns with Proposed Autism 'Registry,'" Autistic Self Advocacy Network, May 13, 2025
https://autisticadvocacy.org/2025/05/disability-rights-and-privacy-advocates-raise-concerns-with-proposed-autism-registry/
8. "Illinois restricts feds' access to autism data," Axios, May 13, 2025
https://www.axios.com/local/chicago/2025/05/13/pritzker-autism-illinois-data-executive-order
9. "What to know about RFK Jr.'s autism registry plan," Axios, April 23, 2025
https://www.axios.com/2025/04/23/autism-registry-rfk-nih
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