WASHINGTON, DC - APRIL 22: National Institutes of Health Director Jayanta Bhattacharya (R), accompanied by Health and Human Services Secretary Robert F. Kennedy Jr. (L) and Food and Drug Administration Commissioner Marty Makary (C), speaks during a news conference at the Health and Human Services Department on April 22, 2025 in Washington, DC. Kennedy and Makary spoke about the intent of the FDA "to phase out the use of petroleum-based synthetic dyes in the nation's food supply." (Photo by Andrew Harnik/Getty Images)
NIH autism study will pull from private medical records – NPR
2025-04-23T17:06:52Z
The National Institutes of Health plans to pool information from private sources like pharmacies and smartwatches.
NIH autism study will pull from private medical records
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The National Institutes of Health will begin collecting Americans’ private health records as part of Health and Human Services Secretary Robert F. Kennedy Jr.’s controversial plan to discover a cause and a cure for autism. NIH Director Jay Bhattacharya told a panel of experts about the plan this week.
The NIH plans to gather information from a wide range of private sources, including pharmacy chains, hospitals and wearable devices with health sensors, like smartwatches.
“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource,” Bhattacharya told the panel, according to The Guardian. “Even data resources that are within the federal government are difficult to obtain.”
The NIH did not return a request for comment.
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Kennedy has made autism research a central pillar of his role as America’s official health advocate. He has made a number of conspiratorial, anti-science claims, including that childhood vaccinations could cause autism, despite overwhelming evidence to the contrary.
Earlier this month, he called autism an “epidemic” and vowed to find an “environmental toxin” responsible for the disorder by September.
“Overall autism is increasing in prevalence at an alarming rate,” Kennedy told reporters at the time. “We’re going to get back to it with an answer to the American people very, very quickly.”
He further described autism as “a preventable disease.”
While the Centers for Disease Control and Prevention did report that autism prevalence in the United States has increased from 1 in 36 children five years ago, to 1 in 31 children in 2022, experts say this is largely due to more comprehensive screening across a broader population.
As for identifying a root cause of the disorder, some experts have also warned that there is likely no single factor determining an autism diagnosis.
“We may have hundreds, if not thousands, of different neurogenetic factors that in combination with complicated environmental interactions influence presentations of autism,” Zachary Warren, a pediatric psychiatrist and autism researcher at Vanderbilt University, told NPR at the time of Kennedy’s remarks.
Bhattacharya, the NIH director, also has a controversial background in the medical community, questioning early on the lethality of COVID-19 and being a vocal opponent to lockdown mandates.
This week, he reportedly backed away from the September deadline, telling reporters that a year is more likely.
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“I would like to have a timeline within a year, where they start to put out the preliminary results or the results. We’ll see. It’s hard to predict how long scientists – you know, nature has its say in how long the results take,” Bhattacharya said, according to CBS.
The NIH plan draws privacy concerns
Already, news of the autism study has triggered backlash from disability and privacy advocates.
New York State assemblyman Angelo Santabarbara, a Democrat, wrote in a statement posted to X that the move was disrespectful to those with autism.
“This idea is dangerous, unethical, and a serious threat to privacy. People with autism deserve dignity and respect—not surveillance by their own government,” he wrote. “I stand with advocates across the country in strongly opposing this proposal.”
Sara Geoghegan, senior counsel at the Electronic Privacy Information Center, said the decision to gather private medical data in this way was a shocking departure from the norm and questioned how NIH planned to protect the information it gained.
“I am almost mind blown here,” Geoghegan said.
“I do think that there can be permissible uses of data for medical research when they are properly scoped and when they have strong and robust safeguards in place to protect personal privacy and personal information. I am very concerned about this type of database that collects information from commercial sources,” she said.
“The collection and processing of personal information, especially health-related information that can reveal health conditions in this way, is out of context and inappropriate,” Geoghegan added.
Andrew Crawford, senior counsel for the Center for Democracy and Technology’s Privacy and Data Project, expressed similar concerns.
“This just strikes me as another example of how the administration is really violating long-standing privacy norms,” Crawford said.
“We’ve seen, for example with DOGE, this just seems like another example and another instance where elements of the federal government are going to be accessing and linking some of the most sensitive personal information out there for government purposes that aren’t very clearly defined or kind of unknown,” he continued, referencing Elon Musk’s Department of Government Efficiency.
There, staffers have been granted unprecedented access to Americans’ sensitive personal data, including Social Security databases.
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