Robert F. Kennedy Jr. has come under intense criticism for his proposal to study autism by accessing private medical records and creating a registry to track Americans with the condition.
Autism, which is described by the Mayo Clinic as a “condition related to brain development,” can vary significantly in its presentation from person to person. However, RFK Jr., who serves as the Secretary of the Department of Health and Human Services, has controversially suggested that autism is preventable and even claimed there is an ongoing “autism epidemic.”
During a Cabinet meeting at the White House on April 17, Kennedy announced, “We’ve launched a massive testing and research effort that’s going to involve hundreds of scientists from around the world. In September, we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.”
As part of this effort, the National Institutes of Health (NIH) revealed on April 21 that it is collecting private medical records from federal and commercial databases. This will allow researchers involved in Kennedy’s study to analyze comprehensive patient data, which is said to offer “broad coverage” of the U.S. population.
“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain,” NIH Director Dr. Jay Bhattacharya explained. “The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain.”
The data will include medication records from pharmacies, lab tests, and genomic data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers, and data from fitness trackers and smartwatches. The NIH is also in discussions with the Centers for Medicare and Medicaid Services to extend agreements governing access to their data.
The study will be conducted by various research groups selected through NIH’s standard procedures. While the researchers will have access to private medical data, they will not be allowed to download it, and the NIH has promised to implement “state-of-the-art protections” for confidentiality.
In addition to the data analysis, the NIH will establish a new disease registry to track individuals with autism across the U.S. The goal is to provide “a robust and secure computational data platform for chronic disease and autism research.” However, this plan has met significant opposition from advocates for people with autism.
One Twitter user, who identifies as a mother of a child with autism, expressed her disapproval, saying, “As a mother of a child with autism, I don’t approve of 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 added, “I do not consent to this. This is not ok.”
This proposal continues to spark debate about the balance between research and privacy, particularly when it involves sensitive medical data.