Advocates Still Alarmed Even as HHS Walks Back Autism Registry Announcement

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A statement that denies the U.S. Department of Health and Human Services is compiling an autism registry, but says instead that it is creating a sweeping database of existing health records, has done little to quell fears among autism advocates. 

Last week, National Institutes of Health Director Dr. Jay Bhattacharya announced that his office would draw on an unprecedented array of public and private records to establish a “disease registry” centralizing information on autistic people’s prescription drug use, insurance claims, Medicare and Medicaid records, genetic and lab tests and even data from smartwatches. 

In response to the strong pushback that followed, the department attempted to walk back the announcement — and blame the media for the furor.

“The original narrative incorrectly suggested that HHS was creating an autism registry to track individuals using personal data,” the department said in a statement to The 74. “This is not accurate. The NIH is developing a secure data repository that will allow researchers to analyze large-scale, de-identified data. The director did not misspeak; rather, the term ‘registry’ was misused by the media, implying an unethical method of data collection.”

However, using video of the NIH announcement, the fact-checking site Snopes was able to establish that the original reporting was accurate. 

Bhattacharya’s initiative followed a promise by U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. that by September, new research sponsored by his department would identify an environmental toxin responsible for what he called an autism epidemic. That theory contradicts mainstream science that links autism to genes and the increasing number of diagnoses to better testing — particularly in low-income households and among children of color. 

Though many autistic children are able to prepare for college and a career when given the proper supports, “These are kids who will never pay taxes,” Kennedy said. “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.”

To head the study, Kennedy appointed a man cited by Maryland officials for practicing medicine without a license. David Geier was also found to have improperly prescribed puberty blockers for autistic children and administered a harmful drug used to treat lead poisoning that is not approved for use in the U.S. 

Given Kennedy’s public proclamations, advocates said they would take a wait-and-see stance to the announcement that the new database would not contain a registry.  

“This is positive news, but given this administration’s previous actions and comments, particularly those related to autism over the last several weeks, we are not assuming that there is no longer anything to worry about,” leaders of the Autistic Self Advocacy Network said in a statement. “Given everything this administration is saying and doing about autism, privacy and public health, we have every reason to distrust this initiative under current leadership at HHS.”

The word “registry” is particularly polarizing to disability advocates, who note that such lists — which still exist in some U.S. states — were used to identify autistic children who were killed in Nazi Germany’s experimental “euthanasia clinics,” as well as people to be sterilized and institutionalized in the United States.  

“ ‘Registry’ and ‘data collection’ can mean many things,” the network said, adding that if advocates had been included in discussions about the proposed research, they could have asked for clarity: “Under previous administrations led by both Democrats and Republicans, we and other organizations had direct lines of communication with autism policy experts inside HHS.”

Several days before the NIH announcement was reported, four dozen organizations that advocate for autistic people issued a rare collective statement criticizing Kennedy’s repeated, disproven claims about a condition many scientists agree is a naturally occurring neurotype. 

“We are deeply concerned by growing public rhetoric and policy decisions,” said the letter. “Claims that autism is ‘preventable’ [are] not supported by scientific consensus and perpetuate stigma. Language framing autism as a ‘chronic disease,’ a ‘childhood disease’ or ‘epidemic’ distorts public understanding and undermines respect for autistic people.”

Unknown is whether the NIH plan will indeed merge records that contain sensitive personal details with datasets that don’t include people’s identifying information. “HHS will … spend tens of millions of dollars linking existing federal databases,” the trade publication Behavioral Health Business reported, attributing the information to a department statement. “The National Institutes of Health (NIH) working to partner with the Centers for Medicare & Medicaid Services, the Centers for Disease Control & Prevention, the Department of Defense, the Department of Veterans Affairs and other agencies to create ‘a comprehensive real-world health dataset that maintains the highest standards of security and patient privacy.’ ”

In its statement to The 74, the department said the dataset being assembled “would be fully compliant with these laws and regulations to protect Americans’ sensitive health information.” 

“Data science can advance our understanding of biomedical and behavioral phenomena and contribute to breakthroughs that improve health by mining large sources of data, such as databases and datasets, for information,” said the statement. “Researchers can use techniques like machine learning and AI in data science to help analyze data and make predictions about health outcomes and disease incidence.”

As of press time, more than 150 researchers belonging to the recently formed Coalition of Autism Scientists had signed a letter calling on HHS and NIH to observe rigorous standards. Kennedy’s controversial dismissal of mainstream beliefs that better diagnosis is a major factor behind the rise in autism rates, and his plans to find, within a few months, an environmental toxin that causes autism, have caused mistrust, they wrote. 

“We were deeply troubled to hear [Kennedy] dismiss past research, downplay the causal role of genes and portray autistic people in ways that counter our experiences and demean their value to society,” the letter says.  

Among other measures, researchers urged Kennedy to pre-register the protocol for any planned study. This voluntary practice — creating a time-stamped, public document outlining what the study will attempt to determine — is intended to counter what is sometimes referred to as “hypothesizing after results are known.” The scholars also want HHS’ researchers to share their data with independent analysts for verification. 

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