SPRINGFIELD, Ill. โ In a decisive stance against federal data collection initiatives, Illinois Governor JB Pritzker has enacted an unprecedented executive order to prevent the federal government from accessing personal health data related to autism. This move appears to be a direct challenge to the Trump administrationโs policies. Last week, Governor Pritzker, a staunch critic of Trumpโs administration, emphasized the importance of safeguarding individualsโ โdignity, privacy, and the freedom to live without fear of surveillance or discrimination.โ
This action followed an announcement by U.S. Health and Human Services Secretary Robert F. Kennedy Jr. concerning a plan to leverage data managed by the National Institutes of Health, alongside claims filed for Medicare and Medicaid, to investigate the root causes of autism. Despite the lack of specific details shared by the agency, Kennedy assured adherence to โapplicable privacy laws to protect Americansโ sensitive health information.โ
Before his appointment as health secretary, Kennedy was associated with anti-vaccine advocates, asserting that childhood vaccines were a cause of autismโa claim that has been consistently debunked by research from the U.S. Centers for Disease Control and Prevention and multiple studies.
The executive order signed by Pritzker prohibits state entities from sharing โpersonally identifiable autism-related dataโ outside the state government unless authorized by the individual or their guardian, mandated by legal action, necessary for essential services like employment or housing, or required by law. This directive extends to state contractors, vendors, and grant beneficiaries.
Governor Pritzker remarked, โWe are taking steps to ensure that our state remains a leader in protecting the rights of individuals with autism and all people with disabilities.โ
Andy Shih, chief science officer at Autism Speaks, a leading national advocacy organization, acknowledged the uniqueness of such a declaration and expressed concern despite Kennedyโs privacy assurances. With advancements in technology, Shih warned that data considered private today might not remain so tomorrow. There exists a potential risk that sensitive information might be misused, potentially leading to withheld constitutional rights from patients.
โThereโs always that concern,โ Shih noted. โBeing proactive to protect privacy, which is something we value as a society, this should be applauded.โ
Kennedy has previously indicated an ambition to identify some causes of autism, or autism spectrum disorder, by September. This complex brain disorder manifests differently among individuals, ranging from severe cases involving nonverbal characteristics or intellectual disabilities to milder forms presenting challenges in social and emotional domains.
Experts, however, caution that Kennedyโs proposed database lacks the necessary genetic information to effectively explore autismโs causes. Nonetheless, Shih recognized that the Health and Human Services announcement referenced developing a platform beneficial for understanding various chronic illnesses, acknowledging its potential utility.
Moreover, Shih highlighted that linking data sets is an established method of studying health issues. He cited a recent study published in the Journal of the American Medical Association, which identified a higher prevalence of dementia among autistic adults over 65 compared to the general population. This significant finding was achieved by connecting numerical identifiers from two separate datasets.