NIH Director Gives Update on New Project to Find Causes of Autism

The director of the National Institutes of Health (NIH) said on April 22 that the new project to identify the causes of autism will likely involve patient records and outside researchers.

“We’d like to … get access to the medical records of a large portion of the American population,” Dr. Jay Bhattacharya, the NIH’s director, told reporters in Washington. “I think to answer a question like this—why is autism rising—you need very large samples of people.”

He also said, “Medical records, I believe, should be a very important part of this, because that’s maybe the best way to track the link between exposures and then what happens afterwards.”

The project could draw data from the Centers for Medicare and Medicaid as well as other parts of the government, such as the military, Bhattacharya said. Patient data would be deanonymized to protect privacy, according to the NIH director.

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Bhattacharya said that the budget for the project, which will be run out of his office, is not finalized yet but will be in the order of tens of millions of dollars.

The process for picking researchers to be involved will be the normal process, with researchers offering proposals, NIH centers evaluating the proposals, and peer reviewers deciding which projects will be approved.

“I don’t know the exact details [of] what that will look like, but the goal is to use the normal way we do science at the NIH to answer a question that the NIH normally has not sought to answer,” Bhattacharya said.

Bhattacharya said at an unrelated briefing earlier on Tuesday that the reason autism is rising is a question “that is at the front of the minds of so many parents across the country worried about their kids, and yet scientific progress on this has been slow because scientists are frankly scared to ask the question.” He said that the NIH “is going to make it so that those questions are no longer taboo among scientists.”

Kennedy has said that vaccines may be one of the causes of autism. Bhattacharya said during his confirmation hearing that he did not think there was a link between autism and vaccines, based on his reading of the literature, although he said he would support investigating the spike in autism.

Kennedy had told the president that “by September, we will know what has caused the autism epidemic,” but Bhattacharya said the project will take longer than that.

Bhattacharya said that the plan is to issue a call for proposals by September. Scientists will then respond to the call, and grants will be approved.

“I would like to have a timeline within a year, where they would start to put out the preliminary results,” he said. He added later: “Secretary Kennedy is enthusiastic to get the scientific process going, and I am too, so … he’s accurately communicating that we want to get moving on this as rapidly as we can.”