WASHINGTON – Health Secretary Robert F. Kennedy Jr. unveiled a proposal on Wednesday to utilize medical data and records from individuals covered by Medicaid and Medicare for investigating autism, although experts suggest that it may not significantly assist in identifying the underlying causes of the condition.
The initiative will entail establishing a data sharing arrangement between the National Institutes of Health, the federal health research agency, and the Centers for Medicare and Medicaid Services, which possesses access to claims data from almost 150 million individuals nationwide.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said in a statement.
According to the HHS statement, the agreement will be crafted in a manner that is “in line with relevant privacy regulations to safeguard the sensitive health data of Americans.” The Department of Health and Human Services did not provide further details in response to inquiries about the initiative.
Using the data, the agency said researchers will focus on autism diagnosis trends, health outcomes from medical or behavioral outcomes, access to care based on demographics and geography as well the economic burden of autism on families and health care systems.
The problem is that this isn’t the kind of data needed to answer questions about autism’s causes, said Helen Tager-Flusberg, professor emerita at Boston University who leads a new Coalition of Autism Scientists pushing back on Kennedy’s characterizations of the condition.
“Enough research has been done at this point to know there is no simple magic bullet,” she said, cautioning that this type of dataset won’t help with the type of research most needed — into genetics and other prenatal, preconception and early infancy factors.
Kennedy has directed the health department to undertake a far-reaching research effort to identify the causes of autism, a complex disorder that impacts the brain. Announcing his plans last month, Kennedy said he plans to provide answers as to what causes autism by September. He has since said the department will determine at least “some” of the causes.
His research directive comes as autism rates in the U.S. are rising, with the Centers for Disease Control and Prevention releasing a report that an estimated 1 in 31 U.S. children have autism, a marked increase from 2020. Scientists and researchers who study autism have said that increase in diagnoses is the result of increased awareness about the disorder, especially among people who exhibit milder symptoms of autism.
Kennedy has rejected that explanation in public appearances, instead describing autism as a “preventable disease” that is caused by environmental factors.
Autism is not considered a disease but a complex brain disorder. Those who have spent decades researching autism have found no single cause, although genetic factors are associated with it. In addition to genetics, scientists have identified various possible factors, including the age of a child’s father, the mother’s weight and whether she had diabetes or was exposed to certain chemicals.
Kennedy’s comments have sparked alarm among autism researchers, who fear he will use the study to support a discredited theory that vaccines cause autism. Kennedy, a longtime vaccine critic has pushed that theory before, although decades of research has found no link between vaccines and autism. President Donald Trump has also suggested that vaccines could be to blame for autism rates.
The new platform that HHS plans to launch around autism will be a “pilot,” that will be used to study chronic conditions and treatments, the agency said.
Associated Press writer Lauran Neergaard contributed reporting.
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