Illinois governor is first in US to block federal access to personal
data on autism
[May 13, 2025]
By JOHN O'CONNOR
SPRINGFIELD, Ill. (AP) — Illinois Gov. JB Pritzker has signed a
first-in-the-nation executive order to block the federal government from
collecting personal health data related to autism, a direct rebuke to
the Trump administration.
Democrat Pritzker, who has been one of the more vocal critics of Trump's
second administration, signed the order last week, saying he wanted to
protect “dignity, privacy, and the freedom to live without fear of
surveillance or discrimination.”
It came two days after U.S. Health and Human Services Secretary Robert
F. Kennedy Jr. announced a plan to use data maintained by the National
Institutes of Health, and claims submitted for Medicare and Medicaid
coverage, to determine the causes of autism. While the agency did not
release details of the plan, Kennedy promised it would follow
“applicable privacy laws to protect Americans’ sensitive health
information.”
Prior to his rise to health secretary, Kennedy joined anti-vaccine
advocates in claiming childhood vaccines are responsible for autism, but
studies by the U.S. Centers for Disease Control and Prevention and
others have ruled that out.
Pritzker's executive order bans state agencies from disclosing
“personally identifiable autism-related data” outside of state
government unless the person or their guardian gives consent, it's
required by legal action, it's necessary to provide services such as
employment or housing or is otherwise required by law. State
contractors, vendors and grant recipients are also covered.
“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,” Pritzker said.
Andy Shih, chief science officer for Autism Speaks, a national advocacy
group funding research and services, said he's unaware of a similar
declaration elsewhere. And while Kennedy promises to abide by privacy
guidelines, Shih said with advances in computational power and
algorithmic thinking, what's private data today might not be tomorrow.
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In this image taken from video, Andy Shih, chief science officer for
the national advocacy group Autism Speaks, discusses Illinois Gov.
JB Pritzker's executive order banning the distribution of personally
identifiable autism health data, Friday, May 9, 2025, in
Springfield, Ill., following the announcement by U.S. Health and
Human Services Secretary Robert F. Kennedy Jr. to link federal
health care datasets to determine the cause of the brain disorder.
(AP Photo/John O'Connor)
Government investigators could use some techniques to get more
information than what is previously disclosed. In the wrong hands,
it could be used against patients to deny them constitutionally
protected rights.
“There’s always that concern,” Shih said. “Being proactive to
protect privacy, which is something we value as a society, this
should be applauded.”
Kennedy has previously said he wants to be able to announce by
September some of the causes of autism, a complex brain disorder
better known as autism spectrum disorder because it affects people
differently. For some people, profound autism means being nonverbal
or having intellectual disabilities, while milder cases might mean
difficulty with social and emotional skills.
Experts say Kennedy’s planned database isn’t appropriate to uncover
autism’s causes in part because there’s no information about
genetics. However, Shih noted that Health and Human Services'
announcement was about creating a platform to help understand a
range of chronic illnesses, which he said could be useful.
Shih added that linking data sets is a proven way of studying issues
of health. He pointed to a study published earlier this year in the
Journal of the American Medical Association that found dementia in
significantly higher numbers among autistic adults over age 65 than
the general population. It was achieved by linking numerical
identifiers from two different data sets.
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