Illinois Governor JB Pritzker has signed an executive order placing strict limitations on how state agencies collect and share autism-related data.
The move, announced on May 7th, comes as a direct response to federal efforts spearheaded by Health and Human Services Secretary Robert F. Kennedy Jr. to establish a national database for autism research.
Secretary Kennedy, a vocal proponent of the “Make America Healthy Again” movement focused on combating chronic diseases, has identified autism as a key area of concern.
In April, during a cabinet meeting under President Donald Trump, Kennedy stated his belief that the government would identify the cause of the “autism epidemic” by September.
These pronouncements and Kennedy’s past anti-vaccine rhetoric have ignited significant backlash from the autism community and medical experts.
Colin Killick, executive director of the Autistic Self Advocacy Network, has previously labeled the health secretary’s statements on autism as falsehoods.
It is crucial to note that autism spectrum disorder is widely recognized as a neurodevelopmental condition, not a disease, characterized by differences in social interaction, communication, and patterns of behavior.
Governor Pritzker’s executive order aims to safeguard individuals with autism from unwarranted data collection and ensure their information is handled with necessity and informed consent.
In a press release, the governor’s office emphasized the order’s intent to protect individuals from unauthorized surveillance and discrimination.
“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” stated Governor Pritzker, a Democrat and frequent critic of the Trump administration.
“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.”
Specifically, Pritzker’s order mandates that all agencies under the governor’s control refrain from collecting or using data scraping technology to gather autism-related data unless such collection strictly adheres to the Health Insurance Portability and Accountability Act (HIPAA) and the Mental Health and Developmental Disabilities Confidentiality Act (MHDDCA).
Furthermore, the order stipulates that state agencies cannot disclose personally identifiable autism-related information to entities outside Illinois state government without explicit informed written consent from the individual or their legal guardian.
Exceptions are made only in cases of court order, subpoena, or when the disclosure is strictly necessary to provide essential educational, medical, employment, housing, or other support services to an autistic individual, or to comply with existing Illinois or federal law. Even in these exceptional cases, the order emphasizes that disclosures must be limited to the minimum necessary information and should be anonymized whenever possible.
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