Secretary of Health and Human Services Robert F. Kennedy Jr. has announced he will begin to amass Americans’ private medical records for an autism registry and study. Dr. Jay Bhattacharya, the director of the National Institutes of Health, announced on April 21 that the NIH would be providing RFK Jr. with medical data that will be collected from several different government and commercial databases. RFK Jr. has pushed the conspiracy theory that autism is caused by vaccines.
Grant Money Will Pay For Study
JFK Jr. has said that he is launching a new autism registry to keep track of Americans diagnosed with autism. According to Dr. Bhattacharya, between 10 and 20 groups of researchers will have access to the private medical records. JFK Jr.’s study will be carried out using grant money.
Data Gathered From Private Records
Bhattacharaya added that the data from the autism registry and study would help researchers come up with “comprehensive” patient data for the U.S. for the first time. He added that the data gathered for the autism registry and study will include private medical records gathered from pharmacies, lab tests, and records from the Department of Veterans Affairs and Indian Health Services, as well as data gathered from fitness trackers and smartwatches.
He added that the data gathered from all of those sources would lead to Americans’ health being monitored in real time. “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,” Bhattacharaya said.
Autism Registry Garners Backlash
News of the autism registry comes on the heels of RFK Jr’s statement on April 16, in which he said, “Autism destroys families. These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem.”
He added, “They’ll never go out on a date. Many of them will never use a toilet unassisted,” JFK Jr. added. His comments sparked outrage among parents of children with autism, as well as advocates. Many argued that Kennedy’s comments were harmful rhetoric.
Experts Say There is No Autism Epidemic
“Parents shouldn’t panic,” Dr. Alex Kolevzon, a child and adolescent psychiatrist, said. “We’re not seeing an epidemic with autism.” RFK Jr’s planned autism registry and database have already received backlash. Critics don’t like the idea of their medical records being shared.
“The rise in prevalence — from 1 in 36 in 2020 to 1 in 31 in 2022 — may reflect several factors, including greater awareness, improved screening and diagnostics, especially in communities that were previously underrepresented through advocacy efforts to better support the Autism community,” The Autism Society said.
The Autism Society then added, “increased awareness of autism plays a pivotal role in educating individuals, parents, educators, and healthcare providers to better identify Autistic traits and characteristics.”
Critics Speak Out
Critic turned to social media to make their voices heard. “This isn’t about health. This is about control. It’s about fear. It’s about marking people. People like me. Neurodivergent people,” one X user shared.
Gun violence prevention activist Fred Guttenberg, called the plan “designed to hurt people” on X. “RFK Jr.’s autism registry is a chilling overreach; tracking private medical data without consent violates HIPAA and echoes eugenics. It’s not about health; it’s about control. Stop this now,” wrote X user Richard Angwin, who has 190,000 users.
Kennedy Calls Autism Preventable
“The autism epidemic has now reached a scale unprecedented in human history because it affects the young. The risks and costs of this crisis are a thousand times more threatening to our country than COVID-19. Autism is preventable, and it is unforgivable that we have not yet identified the underlying causes. We should have had these answers 20 years ago,” JFK Jr. said early this week.
He added that autism is a “preventable disease,” adding: “We know it’s environmental exposure. It has to be. Genes do not cause epidemics. They can provide a vulnerability, but you need an environmental toxin.” During a recent Cabinet meeting, RFK Jr. said that he will discover a way to reduce the prevalence of autism, and will know the cause of autism by September. Kennedy has not shared how he intends to do that.
