NIH autism database announcement raises concerns among researchers
A new research initiative from the U.S. National Institutes of Health (NIH) seeks to gather and analyze multiple autism-related datasets to better understand the underlying causes of the condition. Letters of intent are due tomorrow, but the project’s atypical call for applications has autism scientists divided on whether or not to participate.
The Autism Data Science Initiative provides $50 million for an anticipated 10 to 25 projects, according to the 27 May announcement. The funding opportunity uses an Other Transaction (OT) funding mechanism, which tends to be implemented when, among other reasons, a project is expected to evolve over time, more collaboration is required from the NIH or nontraditional research groups are involved, according to an NIH website.For a field that has recently seen budget cuts, some researchers are welcoming the opportunity for funding, says Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University and leader of the Coalition of Autism Scientists, an organization formed in response to Health and Human Services Secretary Robert F. Kennedy Jr.’s claims about the causes of autism. But the unusual nature of the announcement has others concerned, she says.
“There’s just a lot of uncertainty around what the process is going to look like,” says Jacob Michaelson, professor of psychiatry at the University of Iowa. He says that he is not in a position to lead an application, but he will likely contribute to one.
Still, recent instances of the Department of Health and Human Services and the NIH violating norms around research funding have created “a lot of skepticism and mistrust,” Michaelson says. Because there are so many misconceptions about autism, “it is vital that the process that funds autism research be above reproach,” he adds. It should be clear “that there is no underlying agenda that is guiding what autism research is funded.”
He initiative’s goal is to combine new and existing databases to help identify previously uncovered prenatal and perinatal causes of autism, as well as treatments and interventions that lead to improved outcomes for the condition, according to the announcement. Other aims include having independent teams replicate those analyses and identifying gaps in existing datasets.
Projects will be funded for 24 months for complete datasets and 36 months for datasets that need to collect more data, according to the website. That timeline is short, particularly for collecting novel data, Tager-Flusberg says.
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