HHS Autism Data Pilot Faces Criticism, State Pushback

The U.S. Department of Health and Human Services, led by Secretary Robert F. Kennedy Jr., has initiated a pilot project in partnership with the NIH and CMS to create a research database using Medicare and Medicaid data, electronic medical records, and wearable devices to study the root causes of autism. The initiative promises strict anonymization of patient data and adherence to privacy laws. However, autism experts and advocacy groups have raised concerns about the project’s scientific value, noting that existing research already identifies genetic and prenatal factors as primary contributors to autism, and arguing that insurance claims data are unlikely to yield new breakthroughs. Privacy concerns have been heightened, leading state leaders such as Illinois Governor JB Pritzker to issue executive orders protecting residents’ data. Autism prevalence rates have increased in recent years, attributed mainly to improved diagnostics and broader definitions. The project has also been criticized for a lack of autistic representation in its planning process.