Rotterdam, NY (WRGB) — New York State Assemblyman Angelo Santabarbara is speaking out following U.S Health and Human Services Secretary Robert F. Kennedy Jr.’s reported plans to launch a national autism registry using private medical records.
According to a report by CBS News, Kennedy’s plan would involve creating a centralized database to track Americans with autism, raising immediate concerns over the use of sensitive medical information without patient consent.
Santabarbara, Chair of the New York State Assembly Committee on People with Disabilities and the father of a young adult with autism, condemned the idea in a public statement, calling it “deeply disturbing.”
Autism exists across a wide and diverse spectrum,” Santabarbara said. “Individuals with autism—whether they need round-the-clock support or live independently—deserve dignity, privacy, and the freedom to live without fear of being labeled or surveilled by their own government.
He warned that using private medical records to create such a registry would not only be unethical, but also raises “serious legal and ethical concerns.”
“It risks reinforcing stigma, undermining trust in our institutions, and setting back decades of progress made by the disability rights movement,” he said.
MORE:“These are dehumanizing statements” NYS Assemblyman responds to RFK Jr.’s autism comments
The assemblyman also highlighted the historical mistreatment of people with disabilities, warning that proposals like this “bring back painful reminders of times when people with disabilities were targeted, dehumanized, and denied their most basic rights.”
I stand with the many disability rights advocates across the country in opposing this proposal,” Santabarbara said. “The autism community deserves to be respected, supported, and heard—not treated like a statistic.
Santabarbara’s remarks come during Autism Acceptance Month, as he continues efforts to promote understanding and inclusion. He is scheduled to visit Bradt Elementary School in Rotterdam Wednesday afternoon, where he will read to kindergarten students as part of his ongoing advocacy.
The National Institute of Health has not responded to CBS6’s requests for comment, and have yet to confirm to CBS6’s questions of any involvement in the proposed registry.
We will update this story as more information becomes available.
