Gov. Pritzker signs executive order to protect the personal data of people with autism

SPRINGFIELD, Ill. (KBSI) — Governor Pritzker signed an executive order Wednesday, May 7, 2025, to protect the personal data of people with autism in Illinois.

Illinois Governor JB Pritzker signed an executive order to protect people from unauthorized data collection and sharing by state agencies and ensure that autism-related information is handled only when necessary and with informed consent.

This action comes in response to a plan put forth by the U.S. Department of Health and Human Services (HHS) to use personal medical data from people on Medicaid and Medicare to help study autism.

Experts say it’s unlikely to help reveal the condition’s root causes.

According to HHS, the database will draw from insurance claims, medical records, and data from wearable technology such as smartwatches.

HHS said in a statement that the data sharing agreement between health agencies will be, “consistent with applicable privacy laws to protect Americans’ sensitive health information.” 

While Health Secretary Robert F. Kennedy Jr. has referred to autism as a disease, experts say it’s considered a complex brain disorder.

In a statement put out by Pritzker, he addressed people’s concerns about privacy, surveillance of people with disabilities, and discriminatory profiling.

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” said Governor JB Pritzker. “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.”

FOX23 reached out to EP!C – an Illinois non-profit organization that works with people with disabilities and cognitive differences. Marketing Director Ashley Schreck said there were mixed reactions to the announcement made by HHS.

“We were torn. We were excited because we support any kind of focus or support or research or funding that would go into learning more about a diagnosis such as autism,” she said, “but to call it a disease, other than an incurable medical diagnosis, could be confusing.”

Schreck said – in accordance with HIPAA law – the organization never gives away information unless it’s court ordered.

“Someone with a disability, just like anybody else, should have a say in what happens to their information,” she said.

Schreck calls autism a cognitive difference.

“People with autism are not hidden away,” she said. “They’re in your communities. They’re working, they’re living, they’re playing — and so they should have a voice as well.”