RFK Jr.'s $50M autism initiative sparks hope and skepticism

Boston Globe

2 days ago

But researchers are also hopeful that such a financial windfall may generate new insights into the causes of a complex condition that affects millions of children in the United States. The number of children diagnosed with autism, which affects how people communicate and interact with the world, continues to rise. The
The increased prevalence is attributed to improved access to screening, the CDC has said.
'This [initiative] is an opportunity to supercharge what we are doing,' said
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'If we get the money,' Rubenstein said, 'I think we can do a lot of what the [National Institutes of Health] wants us to do, but then we'll have this resource that we can look at outcomes of particular interest … to support the autism community.'
When Kennedy first made his pledge in April to determine the causes of autism, researchers worried it could undermine decades of science by promoting discredited theories linking vaccines to autism.
The
The initiative's guidelines do not specifically list vaccines as a potential nongenetic factor to be studied, but do include pharmaceutical exposure as one possible influence.
Often, researchers face hurdles trying to combine different large databases because of incompatible formats.
BU scientist,
Her proposed mega-dataset would combine census data, including median income, along with other sources, such as proximity to health care and autism specialists in different communities, to see if there are common trends.
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'A big part of this application is to not only see if we ... answer questions, but also figure out where the gaps are in research,' Dukes said.
She, however, has reservations that the data she provides might be misconstrued by people who oppose vaccines.
'But that can happen anywhere,' Dukes said. 'I hope good science, in this case, wins.'
Between 10 and 25 grants are expected to be awarded, with most not expected to exceed $5 million for each two- or three-year project, according to the NIH's guidelines. By comparison, the most common NIH grant typically averages a fraction of that amount,
A
It also expressed concern that NIH staff, under the initiative's guidelines, will be involved in the grant review process itself and have far greater involvement in the execution of the funded projects than is standard.
The process, it said in a statement, 'lacks transparency in the awarding and execution of the research to be conducted.'
Still, Rubenstein, from BU, said the larger grants would give him a chance to amass more data than he is able with much smaller NIH awards.
His proposal aims to create a massive dataset combining health insurance claims from Medicaid, Medicare, and private insurers, along with census data to, for instance, provide researchers with a clearer picture of autism's prevalence by Zip code. That may help shed more light on the link between environmental exposures and autism.
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Lee has found that some medications taken during pregnancy,
'The way that science had been done before by myself and everyone else is, we looked at suspect medications one at a time, or a handful of drugs,' he said.
'It's a great opportunity to do work in this area. I think everyone, regardless of political affiliation, is interested in the health and well-being of our children and our population,' Lee said. 'Hopefully, some good will come of this funding opportunity.'
Mriganka Sur, a professor at the Massachusetts Institute of Technology and director of the
'I do remain worried and even a little skeptical of the goals of this,' said Sur, who turned down an NIH request to review the grant applications because data science is not his expertise.
But, he added, 'it behooves us to support things that can lead to good science. And, as of now, it is possible, even likely, that some good work will come out of this.'
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Kay Lazar can be reached at