Robert F. Kennedy Jr. is facing fierce criticism for his proposal to study autism by accessing private medical records and creating a national registry to track individuals diagnosed with the condition.
Autism, as defined by the Mayo Clinic, is a developmental disorder that affects brain function and varies greatly from person to person. However, Kennedy, who serves as Secretary of the Department of Health and Human Services, has controversially suggested that autism is preventable and pointed to what he describes as an “autism epidemic.”
During a Cabinet meeting at the White House on April 17, Kennedy announced: “We’ve launched an extensive research and testing initiative involving hundreds of scientists globally. By September, we’ll uncover the causes behind the autism epidemic and be in a position to eliminate those harmful exposures.”
As part of Robert F. Kennedy Jr.’s ambitious and controversial autism research initiative, the National Institutes of Health (NIH) announced on Monday, April 21, that it is collecting private medical records from a wide range of federal and commercial sources. This sweeping effort aims to provide researchers selected for Kennedy’s study with access to extensive and diverse patient data that reflects the full breadth of the U.S. population.
“Current data systems are fragmented and notoriously hard to access,” said NIH Director Dr. Jay Bhattacharya, speaking to CBS News. “Even within the federal government, retrieving this information is a challenge—and the NIH frequently ends up paying more than once for the same datasets.”
The data being compiled includes pharmacy records, lab tests, genomic data from patients seen by the Department of Veterans Affairs and the Indian Health Service, insurance claims from private providers, and even biometric data from smartwatches and fitness trackers.
Additionally, the NIH is in ongoing negotiations with the Centers for Medicare and Medicaid Services to expand access to their databases, further bolstering the scope of the project.
The research teams set to analyze the medical records as part of Robert F. Kennedy Jr.’s autism initiative will include 10 to 20 independent groups, selected through standard NIH vetting procedures, according to NIH Director Dr. Jay Bhattacharya. While these researchers will have access to sensitive patient data, Bhattacharya emphasized that they won’t be allowed to download it and assured the public that “state-of-the-art protections” will be in place to safeguard privacy.
In addition to the data analysis effort, the NIH plans to launch a new national disease registry focused on tracking Americans diagnosed with autism.
Bhattacharya described the project as a step toward “real-time health monitoring” and said it would establish “a robust and secure computational data platform for chronic disease and autism research.” However, the initiative has already sparked significant backlash—especially from autism advocates and concerned parents.
One user on X (formerly Twitter), identifying as the mother of a child with autism, voiced strong opposition: “As a mother of a child with autism I don’t approve this. My son’s medical records should stay private. We need more funding for programs that benefit our children, not ‘studies’ that don’t help them.” Another user simply stated, “I do not consent to this. This is not okay.”
Despite the criticism, Bhattacharya said the NIH is moving forward on a “rapid timeline” and plans to release the study’s findings in the near future.