HHS wants to create database using data gathered from state agencies
By JADE AUBREY
Capitol News Illinois
jaubrey@capitolnewsillinois.com
SPRINGFIELD — Gov. JB Pritzker issued an executive order Wednesday that bars state agencies from collecting and disclosing data about autism to the federal government unless it’s medically or legally necessary.
The order was in response to a move by the U.S. Department of Health and Human Services earlier Wednesday to research and create a national autism database.
In a statement, Pritzker called the project a “threat” to the rights of disabled individuals. The order stated that the project raises privacy concerns about the collection and use of data, as well as potential “discriminatory profiling or surveillance of individuals with disabilities.”
“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” Pritzker said. “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.”
Executive Order 2025-02 also requires state agencies to follow strict privacy and data protection requirements when they do disclose such data, including making personal information anonymous where it’s practicable and only disclosing the minimum amount of personal information that’s legally necessary.
The move was prompted by an HHS announcement of a research project on Wednesday. The project will allow the National Institutes of Health and the Centers for Medicare and Medicaid Services to have access to data and medical records of Medicare and Medicaid enrollees diagnosed with autism in an effort to research autism, Newsweek reported.
It also directly responded to remarks made last month by U.S. Department of Health and Human Services Secretary Robert F. Kennedy Jr., who called autism an “epidemic” and said that President Trump has tasked him with finding a cause for the “epidemic.”
“Autism is a neurological difference—not a disease or an epidemic,” Pritzker’s order read. “People with disabilities, including individuals with autism, are too often stigmatized and underestimated, and public policy should never diminish the diverse strengths and potential of this community.”
This is not the first time Kennedy has touched on his beliefs about autism. During an interview in 2023, he confirmed that he believes that vaccines cause autism, a theory the U.S. Centers for Disease Control and Prevention and a wide body of research have long since debunked.
Read more: How RFK Jr.’s health proposals could affect Illinois
Executive orders aren’t often enacted by the Illinois governor, as last year he only signed three. This is the second order he has signed this year and is his latest action against the Trump Administration since his trade mission to Mexico this spring.
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