Pritzker signs order to protect personal autism data in response to
federal action
[May 09, 2025]
By Jade Aubrey and UIS Public Affairs Reporting (PAR)
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.
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Gov. JB Pritzker is pictured in his Springfield office. He issued an
executive order this week that bars state agencies from collecting
and disclosing data about autism to the federal government unless
it's medically or legally necessary. (Capitol News Illinois file
photo)
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.
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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coverage to hundreds of news outlets statewide. It is funded primarily
by the Illinois Press Foundation and the Robert R. McCormick Foundation. |
