RFK JR. announces a recent database for research on the “main causes” of autism

After weeks of confusion about his autism research plans, health secretary Robert F. Kennedy Jr. He said on Wednesday that his department would build a “platform in the real world” that would allow researchers to hunt for the causes of the disorder, examining insurance claims, electronic medical documentation and wearing devices such as bright watches.

The department will draw records from Medicare and Medicaid, which together cover about 40 percent of Americans. Kennedy said that the National Institutes of Health and Centers for Medicare and Medicaid Services will work with the project.

It was not clear, however, whether the announcement would satisfy researchers, supporters and parents who reacted with the alarm last month, when Mr. Kennedy and Dr. Jay Bhattachary, director of the National Institutes of Health, Floated – and Then I came back – the idea of ​​the autism register for research. Many were afraid of violations of privacy.

In Illinois on Wednesday Governor JB Pritzker, Democrat, issued an executive order aimed at protecting the privacy rights of the inhabitants of the state in autism. His office said that he moved in response to “growing national fears regarding efforts to create federal autism registers or databases without clear legal security or responsibility.”

The intensive concentration of Mr. Kennedy on autism results from his insistence, despite the evidence that vaccines are guilty for a rapid escalate in autism diagnosis in the United States. Disease control and prevention centers recently reported that about 1 to 31, or 3.2 percent of American eight -year -olds, received a diagnosis.

In the recent database, the health department stated that he would take steps to ensure the privacy of medical data. But it is not clear what tests will be carried out. Kennedy said in the announcement that his department would exploit the platform “to discover the original causes of autism and other chronic diseases.”

Some experts were skeptical.

“This is a register without the word” registry ” – said David Mandell, a professor of psychiatry and a long -term autism researcher at the University of Pennsylvania. He said that some of his research based on Medicaid data, which were complex to obtain, and that at one level he was satisfied with this advertisement.

But he also expressed concern that the data would be “improperly used or confused” or directed towards vaccine tests.

“We create a tool and tools can be used for good and evil,” said Dr. Mandell. “I know many researchers – and I like to think about themselves as one – who used this kind of tools for good. And I’m really afraid that this is happening.”

In determining government research priorities, the advertisement seemed contradictory. While Mr. Kennedy focused on basic reasons, the Health Department said that research focuses on the trends of autism diagnosis; Effectiveness of medical and behavioral procedures; economic burden for families and healthcare systems; and access to care and “differences according to demographics and geography.”

Given the Trump administration attack on the initiative of “diversity, justice and inclusion”, the last priority may seem surprising. But some of the previous studies of Dr. Bhattacharya, from his term as a medical economist at Stanford University, focused on healthcare disproportions, and recently told journalists that he thinks that it is necessary to examine how diseases affect various populations.

“Working about the health of the minority population is not the same as Dei,” said Dr. Bhattacharya in an interview after Kennedy announced that he was taking action against oil.

Jill Escher, president of the National Council for harsh autism and the parent of two adult children with autism, said that she had two minds about the announcement of Mr. Kennedy. On the one hand, she said, she agreed “one hundred percent with the administration that it is extremely urgent to find more answers about autism.”

But she said she was worried that Mr. Kennedy’s approach was “a lot of throws without building hypotheses.” Considering that scientists have been studying autism for at least three decades, she said, she preferred a more systematic approach in which the Department of Health and Social Welfare identified the most burning questions and developed a research program to answer them.

The disorder takes many forms, but is usually marked by a mix of social and communication problems and repetitive behavior. Some people with weighty autism are non -verbal and intellectual disabled; Others in the autism spectrum are simply struggling with social guidelines. Many researchers think that autism is responsible, that a complicated range of factors, including genetics and probably fetal exposures in the uterus.

By extracting this problem, Mr. Kennedy delighted some in the autism community. But many of them were furious with his comments at a press conference last month, when he stated that the disorder could be prevented (experts claim that there was no evidence) and insisted that autism “destroys” the family.

Critics said that he only added a mark around the disorder.

In his announcement on Wednesday, Kennedy said that the platform would start as a “pilot research program” addressed to autism, but eventually he would be available to scientists studying other chronic conditions.