Researchers at Cornell University have received a $5.1 million grant from the Autism Data Science Initiative, as part of the Trump administration's increased scrutiny on the disorder and controversial plans to track direct sources for the complex and widely misunderstood condition.
The National Institutes of Health announced plans for the $50 million grant project this summer to "identify how existing treatments/interventions are used and better understand their outcomes to inform the design of future clinical studies."
The funding comes after the administration had previously announced controversial plans to study autism, including a proposed database of individuals with autism comprised of information from sources ranging from pharmacy chains and hospitals, to wearable devices with health sensors, like smartwatches.
"Autism is a very, very complex disease, both from the cause and the measurement, the diagnosis, and the spectrum of autism," said Judy Zhong, chief of the Division of Biostatistics in the Department of Population Health Sciences at Weill Cornell Medical College. "So that is why when we wrote the [grant] application, we listed three steps to do rigorous scientific replication for autism."
She will lead the Autism Replication, Validation, and Reproducibility Center at Cornell, which will serve as a verification point for all other projects approved through the autism research initiative.
Along with colleagues at Cornell, Zhong says that they will use what they call R squared — a replication system established in 1982 that has worked on over 1,000 projects and hundreds of models.
"What we do is we take a model, for example, using genetic variances to predict a disease outcome," she said. "We take that model, we fit it into our pipeline, and we generate the results on a new set of data, and we compare with the original claim of the model performance like accuracy, etc."
The causes and impact of autism have been the focus of decades of research, but the Trump administration has made the study of the condition a key plank of its public health agenda even as NIH has terminated other federal research grants.
President Trump and Secretary of Health and Human Services Robert F. Kennedy Jr. have made a number of unproven claims about the causes of autism, including touting the long-debunked theory that childhood vaccinations were responsible, and more recently, advising pregnant women against taking the common over-the-counter analgesic Tylenol, despite no clear evidence that acetaminophen was linked to autism diagnoses.
"What we're seeing coming out of this administration is extremely complex and in many ways, quite contradictory," said Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University and founder of the Coalition of Autism Scientists.
"On the one hand, a week ago Monday, we had … from President Trump, from Secretary Kennedy, bogus simplistic ideas that Tylenol and vaccines are responsible for the rise in rates of autism and taking a very simplistic view," she said.
"And in contrast to that, as I read every one of the abstracts for these newly funded grants, not a single investigator is taking such a simple-minded approach," Tager-Flusberg said. "They're all taking a very sophisticated, forward-looking, exciting perspective on the very complex and multifaceted potential nature of factors that contribute to risk for autism."
Tager-Flusberg said the research coming from experts in the field of autism is ultimately extremely promising, despite her concerns that the administration may attempt thumbing the scale by promoting non-experts to roles of prominence within the public health care system.
"We're pretty relieved at what we see here and it's coming out of NIH and we are grateful that the NIH staff who have been involved in developing and seeing this research program through to this point, the amount of work they put into it and the excellent results," she said.
"It was a little bit rocky along the way because of the timeline and some of the unknowns about how this was going to take place, but at this point, we're pretty pleased," Tager-Flusberg said.
As long as researchers can avoid being influenced by external sources, she said this funding into autism research is ultimately a good thing.
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