Little RFK novel says his agency will find the cause of autism. These researchers are actually looking for
The annual meeting of the International Society for Autism Research is held in Seattle this week.
The field’s premier scientific conference is scheduled to be held in Emerald City five years ago until Covid-19 undermines those plans. This time, American autism researchers face a completely different crisis: huge Cut federal fundingCabinet members made fake Statement About the complex neurological conditions they studied and a series of Confusing and possibly worrying Policy Announcement on Autism Research.
In April, the U.S. Department of Health and Human Services revealed that it plans to conduct a $50 million “full research effort aimed at understanding [autism spectrum disorder] A department spokesperson said.
Kennedy made many scientific inaccurate statements about autism at his first press conference last month: This is preventable (No evidence That's); studying its genetic basis is a “dead end” (Genes play an important role); children with autism “never take a job” (autism manifests itself in countless different ways, many people with autism work), and perhaps most importantly, “we know it’s an environmental exposure” (this is mild, this is Far from the established fact)
A HHS spokesman said Thursday that the agency is developing a “massive, secure data repository” to better understand the causes of conditions such as autism and chronic diseases, similar to the National Cancer Institute. Surveillance, epidemiology and final results program.
This clarifies the statement by Dr. Jay Bhattacharya, director of the National Institutes of Health, at a April 21 meeting with NIH consultants, that the study will partially obtain personal health information collected from various sources, including insurance claims, drug chain drug records and fitness tracker data, a program that has been widely reported as “automatic domination.”
Otherwise, HHS provides minimal details on the details of the research work, and Kennedy initially said it would return results as early as September. (Bhattacharya has since been postponed on this timeline, saying grants will only begin attending the participating researchers before the end of the summer.)
One six senior scientists interviewed in this article said they and anyone they know were not consulted.
“I’m a person who knows a lot of people in this field,” said Boston University Professor Emerita and director of the Center for Autism Research, a person I know has come across. ”
Tager-Flusberg is a member of the HHS’ Inter-Authorit Coordination Committee for Autism, which advises the Autism Research Agency and Congress. She said the committee has not received any communications from HHS since Trump took office in January and has not been informed or consulted for the latest research program.
“With one hand [Kennedy‘s] She said they have provided $50 million in new research, and on the other hand, they have canceled a large number of grants that have already conducted cutting-edge research on autism. [studying] Over the past three decades, the cause of autism is so it is disturbing to hear that all of this is dismissed. ”
So far, the U.S. government is the largest investor in autism research in the United States. During 2019 and 2020, the latest period with data available, federal grants totaled $350 million. 82.5% of the autism studies in the United Statesthe rest comes from private sources.
“Federal funding is the engine of research, and of course, the engine of incredible progress in autism research over the past 25 years,” said Matthew Lerner, associate professor at the AJ Drexel Institute for Autism at Drexel University and a member of the Board of Directors of the International Autism Society.
Several researchers also said they found that Kennedy insisted on autism was due to confusion about exposure to undetermined environmental sources. They say the role of environmental factors in autism has been a major focus area for government-funded research, although it is a more nuanced approach.
When scientists talk about “environmental exposure,” they refer to any non-state effects before or after birth. These range from prenatal stress hormones to neighborhood pollutants to schools where children attend.
“Any scientist will tell you that this is a complicated thing, you can't just look at one [cause]you have to consider the role of the environment, the role of genetics, their interactions, and changes throughout the life cycle. ” Alycia HalladayChief Science Officer of the Nonprofit Autism Science Foundation. “We do know that there are a lot of environmental exposures that have not been studied. We can't say it's an environmental toxin.”
Dr. Shafali Jeste is more blunt.
“This is the life we devote to,” said the Los Angeles pediatric neurologist. “If we knew there might be an environmental reason, would we be looking for it there, maybe we've found it because we've been doing 20 years of research?”
Cuts and chaos in the second Trump administration have had an impact on the research community.
Several people interviewed in this article asked not to quote names for fear of revenge, or to specify that they can only speak on their behalf as required by the agency, rather than the employer.
In late April, Tager-Flusberg established a coalition of autistic scientists, and a group of senior researchers united around the common goal of promoting disinformation and advocating evidence-based research methods.
She said more than 200 scientists signed the contract immediately. But when young researchers asked to join, she discouraged them from doing so. Saying it out loud may cost them a job.
“I really have nothing to lose,” she said. But “the last thing I want is to put anyone's career at risk.”
