The controversy brewing behind RFK Jr.’s national autism registry and data initiative
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Peter J. Smith, MD, associate professor of pediatrics at the University of Chicago, is quick to the point. “This is an absolute ethical minefield,” Smith says of Health and Human Services Secretary Robert F. Kennedy Jr.’s newly announced National Autism Data Initiative.
The federal plan proposes to analyze Medicaid and other medical records without individual consent as part of a $50 million study. It has ignited fierce debate among scientists, disability advocates, and physicians. Critics argue the initiative threatens the privacy and dignity of individuals with autism.
Kennedy, who has long promoted discredited theories linking vaccines to autism, unveiled the sweeping plan to mine national health data in search of an environmental cause for what he calls “the autism epidemic.” Though details remain sparse, Kennedy has said the initiative would rely on de-identified medical records, accessed without individual or parental consent.
“This is a preventable disease,” Kennedy said during a press conference, citing no data to support his claim. “We know it’s an environmental exposure. It has to be.”
But many experts call the plan scientifically flawed and ethically dangerous.
“There’s a reason researchers go through months of IRB [institutional review board] review,” says Smith, who also serves on the faculty of the MacLean Center for Clinical Medical Ethics at the University of Chicago. “That’s not red tape — that’s ethical rigor. And this completely sidesteps it.”
The consent crisis
At the heart of the controversy is Kennedy’s proposal to access vast troves of medical claims data — including from Medicaid, Medicare, and wearable health devices — without individuals’ consent. The goal, he says, is to pinpoint the year, location, and environmental conditions that may have triggered the rise in autism diagnoses.
“My initial reaction was horror,” says Betsy Becker, of Michigan. A pediatric nurse practitioner, Becker specializes in behavioral development and the mother of 22-year-old Nolan, who has autism. “Anytime you’re making a database or registry, that’s a little worrisome. We think about registries — we think about criminals.”
Becker says she would be both angry and scared if her son’s data were used in such a project without consent, even if de-identified. “It reminds me a lot of the same fears that people have with DNA testing or genetic profiling. Autism is a pre-existing condition. It can cause all kinds of prejudice against work, against living independently.”
She also challenges the premise of the initiative. “RFK Jr. is portraying autism like it’s a disease we need to cure. I don’t want anybody trying to cure my child. He doesn’t need to be cured.”
Her son agrees. “It reminds me a lot of the Holocaust,” Nolan says. “When people who were Jewish had to be put on registries and stuff like that. It makes me worried because I don’t know how they’re going to use that kind of information, and I don’t see that it could benefit me in any way, shape, or form.”
Public health researchers argue that such an approach ignores the complex evolution of autism diagnostic criteria and could violate legal privacy protections.
Kamala Cotts, MD, associate professor of medicine at UChicago Medicine and affiliate faculty at the MacLean Center, says the idea that large datasets can be truly anonymized is a misconception. “Even if names are removed, combining birth dates, locations, and diagnostic codes can make it possible to re-identify individuals, especially in smaller communities. This puts vulnerable populations at risk of breaches of confidentiality,” she says.
Cotts also highlights the historical mistrust between the autistic community and researchers. “For years, families have been protective of their data because of past experiences where research wasn’t transparent or community-centered,” she says. “An initiative that sidesteps consent could damage the fragile trust necessary for meaningful research partnerships.”
Erin Hickey, MD, assistant professor of clinical medicine and pediatrics at the University of Illinois Chicago and a primary care doctor who primarily takes care of kids and adults with intellectual and developmental disabilities, is equally frank.
“You’re talking about taking people’s health information without their permission and using it to push a theory that’s been debunked,” Hickey says. “That’s not research — that’s exploitation.”
She adds that such a plan would violate basic ethical and legal standards. “The idea that you can just mine medical claims data and existing registries without consent — it’s completely unethical and would never be approved by any institutional review board,” she says. “You would be breaking the original research agreements that protect patients’ autonomy and privacy.”
HHS confirmed in a May 7 statement that the National Institutes of Health and the Centers for Medicare & Medicaid Services will partner on a “real-world data platform” to explore the causes of autism and other chronic diseases. While the agency denies creating a national registry, the platform will include Medicaid and Medicare claims, electronic health records, and wearable device data such as from smartwatches.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy says in the statement. HHS states the effort will initially focus on autism diagnoses before expanding to other conditions.
Public reaction was swift. A petition opposing the project surged from 2,500 to nearly 35,000 signatures in one day — and now exceeds 51,000. Critics have also raised alarm over reported remarks by NIH Director Jay Bhattacharya, who allegedly informed staff of plans to compile a national database of Americans with autism, fueling concerns of a backdoor registry.
Ignoring the evidence
Experts also question the scientific foundation of the initiative — particularly the idea that autism stems from a single environmental toxin.
“Anybody who studies autism would never say, ‘I’m going to find the ‘one’ cause of autism,’” Smith says. “We don’t see autism as one thing. It’s not a disease like measles. It’s more like saying someone is European. There’s heterogeneity — different causes, different manifestations, different needs.”
He adds that what appears to be an “explosion” in autism rates is largely due to changes in diagnostic criteria, greater public awareness, and expanded access to services. “You can’t compare today’s data with data from 30 years ago without taking that into account.”
Hickey agrees. “Autism arises from a wide range of interacting genetic, environmental, and developmental factors. To reduce it to a simplistic narrative isn’t just wrong — it’s dehumanizing.”
“I think he has a sort of ‘Rain Man’ mentality in his head, and that’s not reality,” Becker says. “Yes, autism presents challenges — that’s why it’s a diagnosis — but there are also incredible strengths and unique perspectives. The framing of it as purely a burden is reductive and dangerous.”
A legacy of harm
More troubling, Smith says, is the initiative’s disregard for the historical mistreatment of people with intellectual and developmental disabilities in the U.S.
“We have a history of doing bad things to these populations,” he says, citing forced sterilizations, institutionalization, and exclusion from civil society. “If you go in with a mindset that these individuals are a burden on society, that’s when harm is done.”
Kennedy has referred to autism as an economic burden on American families and the government in public statements — language that Smith says crosses a moral line.
“That really gets to the core of equating personhood with productivity,” Smith says. “That’s what I’ve spent my career fighting against.”
He adds that Kennedy’s stance is especially jarring given the family’s historic advocacy for disability rights. “It strikes me as nearly impossible to grow up in that family and not understand this history,” he says. “This is the exact kind of mindset the Kennedys fought to dismantle.”
Becker says autism can be challenging, “but if we’re going to talk about who’s a burden on family or society? Well, we can say that about every child.”
She also sees ripple effects in her own practice. “I’ve had several families back out of [behavioral] evaluations because they’re afraid of getting diagnosed and being put on a registry,” she says. “Now these kids aren’t getting services they need — speech therapy, occupational therapy, classroom support. So ironically, it creates more strain on schools and families.”
A threat to public trust
Looking beyond autism specifically, critics warn that the initiative could further erode public trust in medical research.
“This type of project, framed this way, will make it harder for legitimate researchers to engage with the autism community,” Cotts says. “It sends the message that research is something done to people, not with them.”
Hickey, who leads UIC’s Lifespan Disability Clinic, says her patients are far more concerned with practical needs than sweeping data initiatives.
“About 30% of our patients are autistic,” she says. “What they’re worried about is losing Medicaid or the community supports that help them live independently. This distracts from their real, urgent needs: access to care, housing, employment, and dignity.”
Hickey stresses that she isn’t arguing against autism research. “We absolutely need more research and support for people with autism,” she says. “But it has to be ethical, community-driven, and based in science. Otherwise, we’re doing more harm than good.”
Smith agrees. “These families need help,” he says. “We’re not denigrating them. We want to help them. But to jump to, ‘They’re a burden on society’? Whoa.”
Awaiting answers
Kennedy’s office has not responded to detailed questions about the initiative’s structure, funding, or legal authority. Whether the project would require Congressional approval or changes to federal privacy laws such as HIPAA remains unclear.
However, even the idea of such a program could have far-reaching consequences.
“When you elevate pseudoscience to the level of national policy, you give it credibility,” Cotts says. “And that undermines everything we’ve worked for — scientifically, ethically, and socially — for decades.”
Instead of pushing for an autism registry, Becker says Kennedy should’ve started by asking questions. “The first thing you do when you want to help a group is ask them what would be helpful,” Becker says. “That hasn’t happened here. Instead, this entire initiative feels removed from the people it claims to serve.”
Catherine Gianaro, a freelance writer and editor based in Chicago, has written about healthcare and higher education for more than three decades. With 90-plus awards in communications, she is well-versed in storytelling.
