Autism advocates call the initiative ‘alarming’
Robert F. Kennedy Jr. is facing sharp criticism over his controversial plan to create a national autism registry and gain access to individuals’ private medical information as part of a large-scale autism research initiative.
Autism, which the Mayo Clinic defines as a neurological condition affecting brain development and varying significantly between individuals, has been characterized by Kennedy—now serving as Secretary of Health and Human Services—as a potentially avoidable disorder. He has further asserted that the U.S. is dealing with an ‘autism epidemic.’
During a Cabinet session at the White House on April 17, Kennedy announced: “We’re launching an extensive research and testing campaign, engaging hundreds of scientists globally. By September, we expect to determine the root causes behind the rise in autism cases and eliminate the environmental triggers responsible.”
As a component of this initiative, the National Institutes of Health (NIH) revealed on April 21 that it is pulling together private medical data from both federal and commercial sources. This comprehensive dataset is expected to provide selected research teams with in-depth information covering a broad segment of the American population.
NIH Director Dr. Jay Bhattacharya explained to CBS News, “Current data sources are scattered and difficult to access. Sometimes we even pay multiple times for the same information. Data within the government itself is often not easily available.”
The types of data being collected include prescription records from pharmacies, genetic and lab test data from institutions like the Department of Veterans Affairs and Indian Health Service, insurance claims, and even health metrics from smartwatches and fitness devices. Additionally, the NIH is negotiating with the Centers for Medicare and Medicaid Services to expand access to their records.
According to Bhattacharya, 10 to 20 external research teams will be selected through standard NIH procedures to analyze the data. While these researchers will be allowed to access the information, they will not be able to download it, and the NIH is promising high-level data security to protect individuals’ privacy.
In parallel with the data study, the NIH is also launching a registry specifically for tracking individuals diagnosed with autism.
Bhattacharya emphasized that this real-time monitoring system aims to build “a secure and powerful computational platform for researching chronic diseases and autism.” However, the proposal has triggered significant pushback from autism advocates.
One woman on Twitter, identifying herself as a mother of a child with autism, expressed her disapproval of the initiative. “As a mother of a child with autism, I don’t approve this. My son’s medical records should remain private. We need more funding for services that actually help our children—not for research that does nothing for them,” she wrote, calling the effort “terrifying.”
Another critic added, “I do not consent to this. This is not ok.”
Despite the backlash, Bhattacharya stated that the NIH plans to release findings from the project swiftly.