After a week of confusion about his plans for autism investigation, Health Secretary Robert F. Kennedy Jr. said Wednesday that his department would build a “real world platform” that would allow researchers to look for causes of the disorder by examining insurance claims, electronic medical records and portable devices such as smart watches.
The department will draw the Medicare and Medicaid records, which together cover about 40 percent of Americans. The National Health Institutes and Medicare and Medicaid service centers will be associated in the project, said Kennedy.
But it was not clear if the announcement would calm the researchers, defenders and parents, who reacted with alarm last month when Mr. Kennedy and Dr. Jay Bhattacharya, director of the National Institutes of Health, floated, and then returned, the idea of an autism registry for research. Many feared privacy violations.
In Illinois, on Wednesday, Governor JB Pritzker, a Democrat, issued an executive order aimed at protecting the privacy rights of state residents with autism. His office said he made the movement in response to “the increase in national conerns on efforts to create federal records or databases of autism without safeguards or clear legal responsibility.”
Kennedy’s intense approach in the voice of autism by his insistence, despite the evidence of contrary, that vaccines are to blame for the rapid increase in autism diagnoses in the United States. The centers for disease control and prevention recently reported that approximately 1 in 31, or 3.2 percent, or eight -year -old Americans have received a diagnosis.
For the new database, the Health Department said it would take measures to guarantee the privacy of medical data. But it is not clear precisely what children or investigations will be carried out. Mr. Kennedy said in the announcement that his department would use the platform “to discover the fundamental causes of autism and other chronic diseases.”
Some experts were skeptical.
“It is the record without the word ‘registration’ in it,” said David Mandell, a professor of psychiatry and autism researcher for a long time at the University of Pennsylvania. He said that part of his research had been based on Medicaid data, which had a difficult bone to access, and that our level welcomed the announcement.
But he also said that the data would be “misused or malplaced”, or would go to vaccine studies.
“We are creating a tool, and the tools can be used for good and for evil,” said Dr. Mandell. “I know many researchers, and I like to think about myself as one, that this child or tool has used forever. And I really worry that this is not what happens.”
When describing government investigation priorities, the announcement seemed contradictory. While Mr. Kennedy focused on root causes, the Health Department said studies would focus on autism diagnosis trends; The effectiveness of medical and behavioral treatments; The economic burden for families and medical care systems; and access to care and “demography and geography disparities.”
Given the assault of the Trump administration to the “diversity, equity and inclusion” initiatives, the last priority might seem surprising. But some of the previous investigations of Dr. Bhattacharya, of his mandate as a medical economist at Stanford University, focused on medical care disparities, and recently told reporters that he thought it was appropriate to examine how the albums affected the difficult populations.
“The concern for the health of minority populations is not the same as Dei,” said Dr. Bhattacharya in an interview after Mr. Kennedy announced that he was taking measures against oil -based food dyes.
Jill Escher, president of the National Council of Severe Autism and mother of two adult children with autism, said she has two minds about Mr. Kennedy’s announcement. On the one hand, he said, he agreed in “one hundred percent with the administration that it is incredible to find more answers about autism.”
But she said she was concerned that Mr. Kennedy’s approach was “a lot of dart launch without the construction of hypothesis.” Since scientists have the autism of study of legs for at least three decades, he said, preferred a more systematic approach in which the Department of Health and Human Services identified the most pressing questions and developed an investigation agenda to answer.
The disorder takes many forms, but is generally marked by a mixture of social problems and communication and repetitive behavior. Some people with severe autism are not verbal and have intellectual disabilities; Others in the autistic spectrum simply fight with social signals. Many researchers believe that a complicated range of factors, including genetics and possible fetal exhibitions in the uterus, are the response for autism.
At the beginning of the problem, Mr. Kennedy has delighted some in the community of Autism. But many were enraged by their comments at a press conference last month, when he said that the disorder is prevention (experts say there is no evidence of this) and insisted that autism “destroys” families.
Critics said it only joined the stigma around the disorder.
In his announcement on Wednesday, Mr. Kennedy said the platform would begin a “pilot research program” aimed at autism, but would be available to researchers who study other chronic conditions.
