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JB Pritzker signs order to fight RFK Jr.’s data collection on autism

The Illinois governor denounced the health secretary’s autism registry as creating “fear of surveillance or discrimination.”

Illinois Gov. JB Pritzker is leading the charge to protect residents in his state from Health and Human Services Secretary Robert F. Kennedy Jr.’s controversial autism database, signing an executive order on Wednesday to shield Illinoians’ medical information from the feds. 

Kennedy, who has spread conspiracy theories about autism and recently faced a backlash for broadly painting people with autism as incapable of leading a normal life, raised further fears after he announced that HHS would establish a registry of people with autism as part of his dubious fishing expedition into the “root causes” of the disorder. For the record, those questions have had answers for years now. 

Although HHS officials have denied they are establishing an autism registry, Kennedy said Monday the plan is still in effect but will be “voluntary” for participants, while vowing to protect Americans’ privacy. Pritzker isn’t taking any chances. 

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” he said in a news release announcing his executive order. “As Donald Trump and DOGE threaten these freedoms, we are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.”

The news release rebukes Kennedy’s false and widely denounced framing of autism as an “epidemic” and explains what the order means in practice: 

Under this Executive Order, state agencies may not collect or disclose personally identifiable autism-related data unless it is required for care, legal compliance, or program eligibility—and must always follow strict privacy and data minimization rules. Contractors, vendors, and grantees who work with state agencies are also covered by this executive order, and shall not collect, store, or disclose autism-related data. All disclosures must be limited to the minimum amount of information necessary to meet the legal requirement, and should be anonymized where allowed and practicable.

Pritzker continues to set himself apart among the governors seemingly most willing to buck the Trump administration and defend liberal constituencies. In April, he garnered support for mocking “do-nothing Democrats” who “want to blame our losses on our defense of Black people and trans kids and immigrants, instead of their own lack of guts and gumption.” An executive order protecting his residents’ medical privacy from the administration’s prying eyes seems like another way Pritzker is trying to set a standard for Democratic resistance in Trump’s second term.

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