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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 鈥渄isease registry鈥� centralizing information on autistic people鈥檚 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 鈥� and blame the media for the furor.

鈥淭he original narrative incorrectly suggested that HHS was creating an autism registry to track individuals using personal data,鈥� the department said in a statement to 蜜桃影视. 鈥淭his 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 鈥榬egistry鈥� was misused by the media, implying an unethical method of data collection.鈥�

However, using video of the NIH announcement, the fact-checking site Snopes 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 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 鈥� 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, 鈥淭hese are kids who will never pay taxes,鈥� Kennedy said. 鈥淭hey’ll never hold a job. They’ll never play baseball. They’ll never . 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鈥檚 public proclamations, advocates said they would take a wait-and-see stance to the announcement that the new database would not contain a registry.  

鈥淭his is positive news, but given this administration鈥檚 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,鈥� leaders of the Autistic Self Advocacy Network said in a statement. 鈥淕iven everything this administration is saying and doing about autism,  and public health, we have every reason to distrust this initiative under current leadership at HHS.鈥�

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

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

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

鈥淲e are deeply concerned by growing public rhetoric and policy decisions,鈥� said . 鈥淐laims that autism is 鈥榩reventable鈥� [are] not supported by scientific consensus and perpetuate stigma. Language framing autism as a 鈥榗hronic disease,鈥� a 鈥榗hildhood disease鈥� or 鈥榚pidemic鈥� distorts public understanding and undermines respect for autistic people.鈥�

Unknown is whether the NIH plan will indeed merge records that contain sensitive personal details with datasets that don鈥檛 include people鈥檚 identifying information. 鈥淗HS will 鈥� spend tens of millions of dollars linking existing federal databases,鈥� the trade publication , attributing the information to a department statement. 鈥淭he 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 鈥榓 comprehensive real-world health dataset that maintains the highest standards of security and patient privacy.鈥� 鈥�

In its statement to 蜜桃影视, the department said the dataset being assembled 鈥渨ould be fully compliant with these laws and regulations to protect Americans鈥� sensitive health information.鈥� 

鈥淒ata 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,鈥� said the statement. 鈥淩esearchers can use techniques like machine learning and AI in data science to help analyze data and make predictions about health outcomes and disease incidence.鈥�

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鈥檚 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 . 

鈥淲e 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,鈥� the letter says.  

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

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