After weeks of confusion about his plans for autism research, said health secretary Robert F. Kennedy Jr. Wednesday that his department would build a “real-world platform” with which researchers can hunt for the causes of the condition by insurance claims, electronic medical records and portable devices such as Smart Watches.
The department will draw the records of Medicare and Medicaid, which together cover around 40 percent of Americans. The National Institutes of Health and the Centers for Medicare and Medicaid Services will work together on the project, Mr. Kennedy said.
But it was unclear whether the announcement of researchers, lawyers and parents who responded with alarm last month would mitigate when Mr. Kennedy and Dr. Jay Bhattacharya, the director of the National Institutes of Health, Dreef – and then walked back – The idea of an autism register for research. Many feared privacy violations.
In Illinois on Wednesday, Governor JB Pritzker, a Democrat, an executive order issued Focused on protecting the privacy rights of state residents with autism. His office said he made the switch in response to “rising national concerns about efforts to create federal autism registers or databases without clear legal guarantees or accountability.”
Mr. Kennedy’s intense focus on autism stems from his insistence, Despite evidence otherwisethat vaccines are to blame for the rapid rise in autism diagnoses in the United States. The Centers for Disease Control and Prevention Recently reported That about 1 in 31 or 3.2 percent of the American eight -year -olds received a diagnosis.
For the new database, the health department said that steps would take to guarantee the privacy of medical data. But it is not clear what kind of research will be carried out. Mr Kennedy said in the announcement that his department would use the platform “to discover the root causes of autism and other chronic diseases.”
Some experts were skeptical.
“It is the register without the word ‘register’ in it,” said David Mandell, a professor in psychiatry and old autism researcher at the University of Pennsylvania. He said that some of his research had familiarized Medicaid data, which had been difficult to access, and that he welcomed the announcement at one level.
But he also expressed his concern that the data would be “abused or abused”, or sent to vaccinate studies.
“We create a tool and tools can be used for the good and for evil,” said Dr. Mandell. “I know many researchers – and I like to consider myself as one – who used this type of tool forever. And I am really worried that that is not what happens.”
When sketching the government’s research priorities, the announcement seemed contradictory. While Mr. Kennedy focused on raw causes, the health department said that studies would concentrate on trends in autism; the effectiveness of medical and behavioral treatments; the economic burden for families and healthcare systems; And access to care and “differences due to demography and geography.”
Given the attack of the Trump government on initiatives for ‘diversity, equity and inclusion’, the last priority may seem surprising. But part of the earlier investigation by Dr. Bhattacharya, from his term of office as a medical economist at Stanford University, focused on differences in health care and recently told reporters that he believed it was appropriate to investigate how diseases influence different populations.
“Concern for the health of minority population is not the same as dei,” said Dr. Bhattacharya in an interview after the Lord Kennedy announced He took action against petroleum -based dyes based on food.
Jill Escher, the president of the National Council for Serious Autism and a parent of two adult children with autism, said she is two thoughts about Mr Kennedy’s announcement. On the one hand, she said, she agreed: “Hundred percent with the administration that it is incredibly urgent to find more answers about autism.”
But she said she was worried about Mr. Kennedy’s approach “throwing many arrows without hypothescent building.” Since scientists have been studying autism for at least three decades, she said, she preferred a more systematic approach in which the Ministry of Health and Human Services identified the most urgent questions and developed a research agenda to answer them.
The disorder takes many formsBut is usually characterized by a mix of social and communication problems and repetitive behavior. Some people with severe autism are non -verbal and have intellectual disabilities; Others in the autism spectrum simply struggle with social signals. Many researchers believe that a complicated series of factors, including genetics and possibly fetal exposures in the womb, are responsible for autism.
By raising the issue, Mr. Kennedy is delighted in the autism community. But many were furious with his comments at a press conference last month, when he claimed that the condition is prevent (Experts say that there is no evidence of this) and insisted that autism “destroys” families.
Critics said he only added to the stigma around the condition.
In his announcement on Wednesday, Mr. Kennedy said that the platform would start as a “pilot research program” aimed at autism, but would ultimately be available for researchers who study other chronic disorders.
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