US EditionPritzker Signs Executive Order Protecting Autistic IL Residents
- On May 7, 2025, Illinois Governor JB Pritzker enacted an executive order in Springfield designed to safeguard autistic residents by restricting state agencies from collecting or sharing their data without proper legal or medical justification.
- The executive order addresses concerns over a recent federal initiative to develop a nationwide autism database for research purposes, highlighting the lack of adequate privacy protections.
- The order bars agencies from collecting and sharing autism-related data unless legally or medically necessary, requiring anonymization and minimal disclosure to prevent discriminatory profiling.
- Governor Pritzker highlighted Illinois’ commitment to safeguarding the rights of disabled individuals by affirming that all residents should be able to live with respect, confidentiality, and free from concerns about monitoring or unfair treatment.
- This order aims to safeguard privacy and inclusion for autistic individuals while addressing community concerns over data misuse in ongoing federal autism research efforts.
25 Articles
25 Articles
Pritzker to protect personal autism data
By Jade AubreyCapitol News Illinoisjaubrey@capitolnewsillinois.com Governor JB Pritzker issued an executive order May 7 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...
JB Pritzker Signs Order Making Illinois First State to Block Federal Access to Personal Data on Autism – WTTW (Chicago)
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.”
Illinois Governor is First in US to Block Federal Access to Personal Data on Autism
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…
Pritzker signs executive order to protect privacy of autistic residents
PEORIA, Ill. (WMBD) -- Governor JB Pritzker has signed an executive order that will protect the privacy of autistic residents in Illinois. Health and Human Services Secretary Robert F. Kennedy floated the idea of creating an autism database. This prompted immediate concern from many people. "Their information should be theirs to share how they decide it should be shared," said Holly Swearingian, manager of OSF Healthcare's Autism Pathways. "So t…
Capitol News Illinois | Pritzker signs order to protect personal autism data in response to federal action
SPRINGFIELD — Gov. J.B. 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.
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