Photo: Nathan Posner/Anadolu/Anadolu via Getty Images
After recently vowing to root out the “cause” of autism by September, Health and Human Services secretary Robert F. Kennedy Jr. is apparently launching a disease registry to monitor Americans with autism. And in a Monday presentation to the National Institute of Health’s advisers, director Jay Bhattacharya announced that the agency has been gathering medical records from across federal and commercial databases as a part of Kennedy’s investigation into autism.
Kennedy, a longtime anti-vaccine conspiracy theorist, has promoted a number of harmful and inaccurate claims about autism during the first few months of his tenure, including that it is a “preventable disease” caused by environmental factors and vaccines. Experts have spoken out against his campaign, pointing out that it would likely be impossible to determine what causes autism by September and that increases in autism diagnoses are not because of a rising epidemic but the result of better screening.
The NIH’s sweep will reportedly include private insurance claims, pharmacy records, smartwatch data, and genomics reports from patients treated by the Department of Veterans Affairs and Indian Health Service. Bhattacharya, a recently confirmed Trump appointment and prominent critic of COVID-lockdown mandates, said during Monday’s presentation, “What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research.” He added that the NIH is also in negotiations with the Centers for Medicare and Medicaid Services to expand federal access to their data.
Bhattacharya said that ten to 20 outside research groups will be granted access to the medical records the NIH is gathering, though they will not be able to download them. He promised “state of the art” confidentiality protections.
Meanwhile, the Trump administration has slashed autism-research funding, much of it from the Department of Education’s now-gutted Institute of Education Sciences. Speaking with reporters on Tuesday, Bhattacharya said he’s already started pushing back RFK Jr.’s deadline, explaining that “it’s hard to guarantee when science will make an advance.” Still, he apparently has big plans for the database, which he says will give federal agencies “real-time health monitoring” on American people.
