Illinois Governor Blocks Agencies From Collecting Data for National Autism Project

Illinois Gov. JB Pritzker has issued a sweeping executive order barring state agencies from collecting or sharing autism-related data unless narrowly required by law, claiming the move protects the rights and privacy of individuals with autism.

The order is a direct rebuke to a new federal initiative — backed by U.S. Secretary of Health and Human Services (HHS) Robert F. Kennedy Jr. — to create a large-scale autism database using Medicare and Medicaid data to better understand diagnosis trends, treatment outcomes and access disparities.

The stakes are high. Rates of autism spectrum disorder (ASD) diagnoses have climbed dramatically over the past two decades, prompting calls from both researchers and families for more robust epidemiological and outcomes data.

Kennedy’s initiative, developed in collaboration with the National Institutes of Health and the Centers for Medicare & Medicaid Services, aims to build a national “real-world data” platform incorporating claims data, electronic health records and other health information, including wearable device metrics.

Yet in a surprise move, Pritzker has shut Illinois out of the effort entirely, fueling a growing controversy that pits privacy against scientific transparency and, arguably, political maneuvering.

An act of protection — or obstruction?

Pritzker framed his order as a necessary defense of individual liberty.

“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” he said, characterizing the federal database as a potential surveillance threat linked to President Donald Trump-era policies.

The executive order bars any autism-related data collection by state agencies unless fully HIPAA-compliant and strictly necessary for service delivery. Even then, personally identifiable data may only be shared externally under narrow conditions, including court orders or written consent.

Several Illinois-based advocacy organizations — including The Autism Program of Illinois, the Southern Illinois Autism Society and the Autistic Self Advocacy Network — backed the order.

Hope, a Springfield-based service provider, praised Pritzker for taking a stand “against reducing individuals to data points.”

Critics of the federal initiative argue that autism research has a history of stigmatization, and that any national database — especially one involving politically sensitive actors — could enable discrimination or future restrictions in education, employment or healthcare.

What’s really driving the pushback?

But the timing and framing of the executive order have raised eyebrows. Is the governor genuinely concerned about medical privacy — or is he politicizing autism to score points against a Trump-Kennedy alliance?

It’s worth noting that the federal program, led by Kennedy, explicitly states it will comply with all privacy regulations. Kennedy himself emphasized the goal of transparency, accountability and long-overdue answers for families living with autism.

TrialSite News has previously reported on the broad scientific consensus that ASD research suffers from fragmented data, delayed diagnoses and inconsistent care — especially in underserved and minority communities.

A centralized database could help resolve longstanding gaps in real-world evidence and inform policy for everything from early intervention to Medicaid coverage rules.

Moreover, critics argue that invoking privacy in this case may be a red herring. Medical records, Medicaid claims and anonymized epidemiological data are already collected under HIPAA.

Most health surveillance data — including that used to track cancer incidence, opioid abuse or vaccine adverse events — is collected in similar ways and rarely provokes such sweeping executive interventions.

The question remains: why is autism different?

A troubling precedent for science and policy?

If Pritzker’s order stands, it may set a precedent for other states to opt out of national health data initiatives based on speculative privacy claims or ideological objections.

That could hinder efforts to track emerging health crises or evaluate long-term treatment safety and effectiveness. It also undercuts scientific independence by implying that autism research tied to federal agencies — or political figures — should be viewed with inherent suspicion.

Meanwhile, the autism rate continues to climb. According to the CDC, 1 in 36 children in the U.S. were diagnosed with ASD by age 8 in 2020, up from 1 in 150 in 2000. Some researchers argue that this steep rise, even accounting for increased awareness and diagnostic shifts, demands urgent and comprehensive investigation.

TrialSite News has covered the limitations of current data silos in understanding the interplay of environmental, genetic and pharmaceutical factors in ASD — issues that a federated research database might help resolve.

Pritzker’s order, though popular with some advocacy groups, risks alienating families who want answers. It also sends a chilling message to scientists that health policy data collection can be blocked at the state level based on fears of discrimination, however unfounded or speculative.

While the protection of individual privacy is paramount, the order conflates informed consent with the rejection of institutional research and raises questions about whether political rivalry is taking precedence over evidence-based inquiry.

Conclusion

At its core, this battle is about who gets to define the boundaries of ethical research and whether political polarization should shape public health science. Pritzker has positioned himself as a defender of privacy, but critics see an opportunistic move to stoke distrust against the Trump-Kennedy administration.

According to TrialSite News founder and publisher Daniel O’Connor, “This move by Pritzker is very questionable, interfering with federal research programs seeking answers — and adhering to existing privacy protection laws.”

Kennedy, for his part, must now decide how to navigate resistance from states like Illinois while advancing what many scientists consider an overdue and essential autism research infrastructure.

TrialSite News will continue monitoring the legal, political and ethical fallout of this executive order as it reverberates through the autism research community and beyond.

Originally published by TrialSite News.