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.
