The Trump administration reportedly has plans to scrape your private medical data from sources like your doctor, your pharmacy, your insurance company, the lab that processes your bloodwork, your smartwatch, and your fitness apps—to create a “registry” of people with autism.
“The National Institutes of Health is amassing private medical records from a number of federal and commercial databases to give to Health and Human Services Secretary Robert F. Kennedy Jr.’s new effort to study autism,” CBS News reported. “The new data will allow external researchers picked for Kennedy’s autism studies to study ‘comprehensive’ patient data with ‘broad coverage’ of the U.S. population for the first time, NIH Director Dr. Jay Bhattacharya said.”
CBS also adds that “a new disease registry is being launched to track Americans with autism, which will be integrated into the data. Advocacy groups and experts have called out Kennedy for describing autism as a ‘preventable disease,’ which they say is stigmatizing and unfounded.”
“By bringing the data into one place,” Bhattacharya “said it could give health agencies a window into ‘real-time health monitoring’ on Americans for studying other health problems too.”
“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 said.
READ MORE: Trump’s SignalGate Sit-Down Mocked as a ‘Him in a Nutshell’ Moment
Critics warn that a registry of people with autism poses great privacy and health risks, while others wonder about HIPAA violations—especially in light of what some say is Secretary Kennedy’s apparent bias against autism and people on the spectrum.
Last week, Secretary Kennedy’s remarks about children with autism drew intense fire.
“This is an individual tragedy,” Kennedy declared (video below). “Autism destroys families. And more importantly, it destroys our greatest resource, which our children. These are children who should not be, who should not be suffering like this. These are kids who, many of them, were fully functional, and regressed because of some environmental exposure into autism when they’re two years old.”
“And 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. They’ll never go out on a date. Many of them will never use a toilet unassisted. And we have to recognize we are doing this to our children,” he alleged, to widespread criticism.
“How are they going to collect all this data without violating HIPAA laws and privacy protection?” Dr. Joel Shulkin asked, as The Daily Dot reported. “How are they going to de-identify all the data so that it cannot be misused against people who are involved in it? And what are they planning to do with that data once they finish their so-called study?”
ASAN, the Autistic Self Advocacy Network, warned: “There is no indication that autistic people whose data is being taken would be afforded any say in whether their data is used or what it is used for. This raises significant moral, legal, and practical concerns. People have a right to decide what is done with data about their health. Unethical science is bad science.”
“Medical data can also easily be manipulated by unscrupulous researchers to create the appearance of causation where it does not exist,” ASAN added. “This has already happened this year with an anti-vaccine ‘study’ about autism that RFK Jr. approvingly cited during his confirmation hearing. The study, which was not published in a reputable scientific journal and did not go through peer review, used Medicaid data from Florida to show that children who had doctors visits to receive vaccinations were statistically more likely to also have doctors visits to receive care for autism.”
And the National Consumers League warns that “RFK Jr.’s autism study will pull private medical records, pharmacy data, insurance claims—even data from your fitness tracker—all under the banner of a flawed and stigmatizing narrative that autism is a ‘preventable disease.’ This kind of data grab raises serious questions about privacy, consent, and how personal health info could be misused in the name of speculative science.”
“RFK Jr.’s proposed national autism registry is straight-up dystopian,” declared Democratic strategist Chris D. Jackson. “Centralizing private medical data—from pharmacies, labs, fitness trackers, even veterans—and handing it to third parties? That’s not research. That’s surveillance. Let’s be clear: this echoes the darkest chapters of history, when regimes like Nazi Germany used medical registries to target and dehumanize vulnerable populations.”
READ MORE: ‘Incompetent. Irresponsible. Negligent’: Calls Mount for Hegseth’s Ouster or Prosecution
“And calling autism a ‘preventable tragedy’? That’s not science—it’s dangerous, ableist propaganda. Autistic people deserve respect, not to be tracked, labeled, or erased.”
Dr. Kristin Lyerly, who hosts The Dr. Kristin Lyerly Show, wrote: “I am very concerned about this effort for so many reasons, including health privacy and respect for people and families living with autism. This reeks of eugenics.”
“First RFK Jr says that people on the autism spectrum are useless eaters,” noted Yale Professor of History Timothy Snyder, an expert on authoritarianism. “And then he announces that the government is going to make a list of them, a ‘registry.'”
Daily Beast columnist Wajahat Ali, like many social media users, wrote: “Nazis did registries by the way.”
Fred Wellman, a West Point and the Harvard Kennedy School graduate, an Army veteran of 22 years who served four combat tours, and now a political consultant and the host of the podcast “On Democracy,” blasted the Trump administration:
“RFK Jr. wants to create a national registry of people with autism. The Admin wants to increase baby supply with a motherhood medal. Trump wants to deport US citizens to a third world gulag. They formed an Anti-Christian Bias Task Force to prosecute people for their speech. A White House advisor is floating arresting Americans for speaking in support of immigrants as terror supporters. Does this all sound familiar?”
Harvard Law Cyberlaw Clinic Instructor Alejandra Caraballo warned: “This won’t be limited to just autism. They’re building the panopticon to track anyone with any ‘undesirable’ illness. This is eugenics, full stop.”
Fred Guttenberg, an anti-gun violence activist who lost his daughter in the Parkland mass school shooting, wrote: “Help me understand how these lunatics who spent years fighting me on gun safety & used the idea of a government registry to create fear, now believe in a government registry to track people with autism. Everything they say is a lie, & everything they do is designed to hurt people.”
A user on the social media platform X posted this response:
“I’m autistic And when I heard RFK Jr. wants a government registry to track people like me using private medical records I didn’t think ‘safety’ I thought Nazi Germany A roundup’s of disabled people Because I know history And I know exactly what comes after the list is made This isn’t about health This is about control It’s about fear It’s about marking people People like me Neurodivergent people Different people Don’t dress it up as policy This is how roundups begin You want to stop autism discrimination? Start by not creating a fucking list.”
Watch the video below or at this link.