Illinois Governor Pritzker Issues Executive Order to Limit Autism Data Collection

Springfield,


Governor JB Pritzker has signed an executive order that places new restrictions on how autism-related data is collected and used in Illinois, citing concerns about privacy and potential misuse of sensitive health information.

The order, announced Monday, directs state agencies to review and revise their data practices, particularly regarding individuals diagnosed with autism spectrum disorder (ASD). Under the new directive, any collection, storage, or sharing of autism-related data must adhere to stricter privacy standards and be justified by a clear public health purpose.

“Protecting the rights and dignity of all Illinois residents — including those with autism — is a top priority,” said Gov. Pritzker in a statement. “This order ensures that data is used responsibly and never in a way that stigmatizes or discriminates against individuals.”

The move comes amid growing national scrutiny of how government agencies and private entities handle medical and behavioral data. Autism advocacy groups have long voiced concerns about the potential for such data to be used inappropriately, whether by employers, insurers, or even law enforcement.

The executive order also calls for the formation of a task force composed of healthcare experts, disability rights advocates, and data privacy specialists. The group will provide recommendations for long-term policy reforms and ensure that any data collection is transparent, consensual, and secure.

Advocates have praised the order as a step toward more ethical data governance.

“This is a victory for the autism community,” said Maria Delgado, a spokesperson for the Illinois Autism Alliance. “People on the spectrum and their families deserve to know their personal information is safe and won’t be weaponized against them.”

The order takes effect immediately, and agencies have 90 days to comply with the new guidelines.

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