After weeks of confusion about his plans for autism research, Minister of Health Robert F. said. Kennedy Jr.
The administration will pull the records from Medicare and Medicaid, which cover together about 40 percent of Americans. Mr. Kennedy said that the national health institutes and Medicare and Medicaid service centers will participate in the project.
But it is unclear whether this announcement will lead to the calm of researchers, preachers and parents, whose reaction was to warn last month when Mr. Kennedy and Dr. Jay Bhatersia, Director of National Health Institutes, and their kindness – were subjected to – and Then he walked again – The idea of autism record to search. Many fear privacy violations.
In Illinois on Wednesday, the governor JB Pritzker, a democratic, Executive order It aims to protect privacy rights for state population with autism. His office said that he took this step in response to “the high national concerns about the efforts made to create federal records or rules of autism databases without legal guarantees or clear accountability.”
Mr. Kennedy’s extreme focus on autism stems from his insistence, Despite the evidence otherwiseThe vaccines are responsible for the rapid rise in autism diagnoses in the United States. Disease control and prevention centers I mentioned recently About 1 out of 31, or 3.2 percent, from eight -year -old children, has a diagnosis.
For the new database, the Ministry of Health said it will take steps to ensure the privacy of medical data. But it is not clear exactly the type of search to be conducted. In the announcement, Mr. Kennedy said that his ministry would use the platform “to reveal the radical causes of autism and other chronic diseases.”
Some experts were skeptical.
“It is the record without the word” record “in it,” said David Mandele, a professor of psychiatry and autistic researcher for a long time at the University of Pennsylvania. He said that some of his research relied on Medicaid data, which was difficult to access, and that at one level he welcomed the advertisement.
But he also expressed concern that the data “misuse or difference”, or is directed towards vaccine studies.
“We are creating a tool, and tools can be used for good and evil.” “I know many researchers – and I love to think about myself as one – who used this type of tool forever. I am really worried that this is not what is happening.”
In defining government research priorities, the advertisement seemed contradictory. While Mr. Kennedy focused on the root causes, the Ministry of Health said that studies will focus on the trends of autism diagnosis; The effectiveness of medical and behavioral treatments; The economic burden on families and health care systems; And access to care and “discrepancies by the population and geography.”
Given the Trump administration’s assault on “diversity, fairness and integration” initiatives, the recent priority may seem surprising. However, some of the previous research of Dr. Bhatersharia, from his term as an economist at Stanford University, focused on health care variations, and told reporters recently that he believed that it is appropriate to study how to affect diseases on the various population.
“Attention to the health of the minority residents Kennedy announced He was taking action against oil dyes in petroleum.
Gil Ishir, President of the National Council for Acute Autism and the father of two adults with autism, said she has minds about the announcement of Mr. Kennedy. On the one hand, she agreed to “a hundred percent with the administration that it is extremely necessary to find more answers about autism.”
But she said that she was concerned about Mr. Kennedy’s approach, “a lot of throwing arrows without building a hypothesis.” She said that because scientists were studying autism for at least three decades, she preferred a more systematic approach, as the Ministry of Health and Humanitarian Services has identified the most urgent questions and developed a research agend to answer it.
the The turmoil takes many formsBut it is usually characterized by a mixture of social problems, communication and repeated behaviors. Some people who suffer from severe autism are not verbal and have intellectual disabilities; Others on the autism spectrum simply struggle with social sermon. Many researchers believe that a complex set of factors, including heredity and perhaps the fetus’s exposure in the womb, is responsible for autism.
In bringing the case in the foreground, Mr. Kennedy secretly secretly in the autism community. But many of them turned their remarks at a press conference last month, when he was Assure That the turmoil Prevented (Experts say there is no evidence for this), and they insisted that autism “destroys” families.
Critics said that he only added to the stigma of shame about this disorder.
In his announcement on Wednesday, Mr. Kennedy said that the platform will start as a experimental research program “aimed at autism, but it will eventually be available to researchers studying other chronic conditions.
