After weeks of confusion about his plans for autism research, Health Minister Robert F. Kennedy Jr. He said on Wednesday that his section would create a “real world platform” that would allow researchers to hunt causes of the disorder by examining insurance claims, electronic medical records and mobile devices such as smart watches.
The department will draw the files from Medicare and Medicaid, which together cover about 40 % of Americans. The National Institutes of Health and Medicare and Medicaid Services will work with the project, Mr Kennedy said.
But it was not clear whether the announcement would receive researchers, supporters and parents, who reacted with alert last month, when Mr Kennedy and Dr. Jay Bhattacharya, director of the National Institutes of Health, floating – and then returning – the idea of a survey. Many are afraid of privacy violations.
In Illinois on Wednesday, Governor JB Pritzker, a Democrat, issued an executive order to protect the rights to protect the privacy of state residents with autism. His office said he made the move in response to “increasing national concerns about efforts to create federal autism or databases without clear legal safeguards or accountability”.
Mr Kennedy’s intense focus on autism comes from his persistence, despite the evidence differently, that the vaccines accuse the rapid increase in autism diagnoses in the United States. Disease Control and Prevention Centers recently reported that about 1 in 31 or 3.2 % of US eight years have been diagnosed.
For the new database, the Ministry of Health said it would take steps to ensure the privacy of medical data. But it is not clear what kind of research will take place. Mr Kennedy said in the announcement that his section will use the platform “to reveal the main 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 of psychiatry and long -term Autism researcher at the University of Pennsylvania. He said that some of his research was based on Medicaid data, which were difficult to access.
But he also expressed concern that the data would be “abused or abused” or directed to vaccine studies.
“We create a tool and the tools can be used for good and for evil,” said Dr. Mandell. “I know a lot of researchers – and I like to think of myself as one – who used this kind of tool for the good and I really worry about this is not the case.”
Describing the government’s research priorities, the announcement appeared contradictory. While Mr Kennedy focused on the roots, the Health Department said the studies would focus on autism diagnoses. the effectiveness of medical and behavioral therapies; the financial burden of families and healthcare systems; and access to care and “inequalities with demographics and geography”.
Given the attack of Trump’s administration on “diversity, equality and integration” initiatives, the last priority may seem amazing. However, some of the previous surveys of Dr. Bhattacharya, since his tenure as a medical economist at Stanford University, focused on healthcare inequalities and recently told reporters that he believed it was appropriate to consider how diseases affect different populations.
“The health concern of minority populations is not the same as the dei,” Dr. Bhattacharya said in an interview, after Mr Kennedy announced that he was taking action on oil -based dyes.
Jill Escher, president of the National Council for serious autism and a parent of two adult children with autism, said it was two minds for Mr Kennedy’s announcement. On the one hand, he said, he agreed “one hundred percent with the administration that it is incredibly urgent to find more answers to Autism”.
But he said he was worried that Mr Kennedy’s approach was “very arrows that she was throwing without a case building”. Since scientists have studied autism for at least three decades, he said, preferred a more systematic approach in which the Ministry of Health and Human Services identified the most pressing questions and developed a research agenda to answer them.
The disorder takes many forms, but is usually characterized by a mixture of social and communication problems and repetitive behaviors. Some people with serious autism are non -verbal and have mental disabilities. Others in the spectrum of autism simply fight with social signs. Many researchers believe that a complex series of factors, including genetics and possibly fetal reports in the uterus, are responsible for autism.
To bring the issue to the forefront, Mr Kennedy thanked some in the autism community. But many were outraged by his observations at a press conference last month when he claimed that the disorder could be prevented (experts say there is no evidence of it) and insisted that autism “destroys” families.
Critics said he added only to the stigma around the disorder.
In his announcement on Wednesday, Mr Kennedy said the platform would begin as a “pilot research program” aimed at autism, but would eventually be available to researchers studying other chronic diseases.
