After weeks of confusion over plans for autism research, Health Secretary Robert F. Kennedy Jr. said Wednesday that his department will build a “real world platform” that will allow researchers to hunt down the causes of disabilities by examining wearable devices such as insurance claims, electronic medical records and smartwatches.
The department draws records from Medicare and Medicaid, which covers about 40% of Americans. Kennedy said the National Institutes of Health and the Centers for Medicare and Medicaid Services will partner on the project.
However, it was unclear whether the announcement would soften researchers, supporters and parents who were alerted when Kennedy and National Institutes of Health Director Dr. Jay Bhattacharya returned last month after floating. Many people feared a violation of privacy.
In Illinois, Democrat Governor J.B. Pretzker issued an executive order on Wednesday aimed at protecting the privacy rights of autistic national residents. His office said it had moved in response to “escalating national concerns about efforts to create a federal autism registration or database without clear legal protection measures or accountability.”
Kennedy's focus on autism stems from his claims despite other evidence, and the vaccine condemns the rapid rise in autism diagnosis in the United States. The Centers for Disease Control and Prevention recently reported that 31 (31 (3.2%) of 8-year-old children in the United States have been diagnosed.
For the new database, the Health Department said it will take steps to ensure the privacy of medical data. However, it is not clear exactly what kind of research will be conducted. Kennedy said his department has announced that it will use the platform to “reveal the root causes of autism and other chronic diseases.”
Some experts were skeptical.
“They're the ones who are psychiatry at the University of Pennsylvania and a longtime autism researcher,” said David Mandel, a professor of psychiatry at the University of Pennsylvania and a longtime autism researcher. He said some of his studies relied on Medicaid data, which was difficult to access, and at one level he welcomed the presentation.
However, he also expressed concern that the data would either be “abuse or misused” or piloted towards vaccine research.
“We're creating tools and tools can be used for good and evil,” Dr. Mandel said. “I know a lot of researchers — and I consider myself alone — I've used this kind of tool forever, and I'm really worried that it's not going to happen.”
The presentation appeared to be contradictory when outlined the government's research priorities. Kennedy focused on the underlying causes, but the Health Department said the research focused on trends in autism diagnosis. Medical and behavioral treatment effectiveness. The financial burden of the family and the health care system. Access to care and “differences by demographics and geography.”
The final priorities may seem surprising given the attacks on the Trump administration's “diversity, equity and inclusion” initiative. However, some of Dr. Bhatacharya's previous work from his tenure as a medical economist at Stanford University has focused on healthcare disparities and recently told reporters he believes it is appropriate to look into how disease affects different populations.
“Concerns about ethnic minority health are not the same as DEI,” Dr. Bhatacharya said in an interview after Kennedy announced he was taking action against oil-based food dyes.
Jill Escher, president of the National Council on Severe Autism and parent of two adult children with autism, said she has two hearts about Kennedy's announcement. On the other hand, she said she agreed with the administration and 100% of the 100% that it would be very urgent to find more answers about autism.
But she said she was worried that Kennedy's approach was “threw a lot of darts without building a hypothesis.” Given that scientists have been studying autism for at least 30 years, she said she preferred a more systematic approach in which the Department of Health and Human Services identified the most pressing questions and developed research questions to answer them.
Disability takes many forms, but is usually marked by a fusion of social and communication problems with repetitive behavior. Some people with severe autism are nonverbal and have intellectual disabilities. Others on the autism spectrum simply suffer from social cues. Many researchers believe that a complex set of factors, such as genetics and fetal exposure in the uterus, are responsible for autism.
When bringing this issue to the forefront, Kennedy is delighted with some of the autism community. However, at a press conference last month, many people were pissed off by what he said. He argued that the disorder is preventable (experts say there is no evidence of this), and autism “destroys” family members.
Critics said he only added stigma about disability.
In his announcement Wednesday, Kennedy said the platform will begin as a “pilot research program” aimed at autism, but will ultimately be available to researchers studying other chronic diseases.
