Ill. Gov. JB Pritzker signs order protecting autism data in response to federal research plan under RFK Jr.
Gov. JB Pritzker on Wednesday signed an executive order that formally restricts the unauthorized collection of autism-related data by state agencies.
Pritzker's order responds to federal efforts under Health Secretary Robert F. Kennedy Jr. to create databases of personal information for those with autism 'without clear legal safeguards or accountability,' according to a news release from Pritzker's office.
'Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,' Pritzker said. 'As Donald Trump and (the Department of Government Efficiency) 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.'
Kennedy said in a news release Wednesday that he aims to build a database using Medicare and Medicaid data to enable research on the 'root cause' of autism. According to the release, the database falls under President Donald Trump's larger efforts to research 'chronic conditions' and will proceed 'in a manner consistent with applicable privacy laws to protect Americans' sensitive health information.'
'We're pulling back the curtain — with full transparency and accountability — to deliver the honest answers families have waited far too long to hear,' Kennedy said in the release.
Pritzker's office said Kennedy's threats to create such a database have sparked 'outrage and concern from tens of thousands of people across the United States, from advocates, to parents, to individuals with autism.' His office also pointed to Kennedy's February statement when he referred to autism as an 'epidemic,' saying it stigmatizes a 'narrative condemned by leading health experts and advocacy groups across the United States.'
Pritzker's order prohibits state agencies from collecting or disclosing personally identifiable autism-related data unless it's required for care, legal compliance or program eligibility. Even then, such efforts must still follow strict privacy and data minimization rules. Contractors, vendors and grantees who work with state agencies must follow the same restrictions, and are barred from storing the data. Any disclosures of autism-related information must also be limited to the minimum amount of information and anonymized when 'allowed and practicable,' according to the order.
Several Illinois advocates, such as Chicagoland Autism Connection, the Southern Illinois Autism Society and Autistic Self Advocacy Network, supported the order.
'It is deeply gratifying to see Illinois affirming the value of our lives, affirming that autism is not an epidemic, and taking concrete action to protect our privacy and ensure personally identifiable information about us does not fall into the wrong hands,' said Colin Killick, executive director of Autistic Self Advocacy Network.
Kennedy is a longtime vaccine critic who has pushed a discredited theory that repeated childhood vaccines cause autism. He announced in early April that he plans to determine the cause of autism by September through a 'massive testing and research effort' involving hundreds of scientists.
Kennedy hired David Geier to lead the research effort in March. Geier also claims there's a connection between vaccines and autism, and the state of Maryland has found he was practicing medicine on a child without a doctor's license.
The Department of Health and Human Services in a Wednesday news release said the database research, accomplished through a partnership between the National Institutes of Health and the Centers for Medicare & Medicaid Services, will use 'claims data, electronic medical records, and consumer wearables' to research diagnosis trends over time, outcomes from 'medical and behavioral interventions,' disparities of access to care and 'the economic burden on families and healthcare systems.'
Pritzker's office said that his latest executive order makes Illinois one of the first states to formally restrict the mass collection or sharing of autism-related data absent legal or medical necessity.
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