JUANA SUMMERS, HOST:
The National Institutes of Health has announced a plan to include private health records in a study of the rising rates of autism spectrum disorder. The move comes just days after Robert Kennedy Jr., the secretary of Health and Human Services, unveiled a plan to find out what causes autism. NPR science correspondent Jon Hamilton joins us now to discuss this all. Hi there.
JON HAMILTON, BYLINE: Hello.
SUMMERS: So, Jon, first off, what do we know about this effort?
HAMILTON: Not a lot. We know it's called Understanding Autism Spectrum Disorder. Dr. Jay Bhattacharya, the NIH director, announced it during an internal meeting this week. And he described it as an effort to explain why autism rates have risen so much. Twenty years ago, the rate was estimated about 1% of children. The most recent data from the Centers for Disease Control and Prevention suggest the rate is now about 3%. Though there is debate about whether the apparent increase is from better detection or broadening the definition of autism.
SUMMERS: Interesting. So what do we know about how this initiative is going to look for an explanation?
HAMILTON: Apparently, the idea is to create a national database of autistic people and then search for anything that might have contributed to their diagnosis. So this would involve using artificial intelligence to look at records from doctors, hospitals, insurance companies, pharmacies, even federal programs like Medicaid, Medicare and Veterans Affairs. Then there's environmental data, which could include things like exposure to lead as a child, air pollution, even vaccines. And HHS Secretary Kennedy, who oversees the NIH, sees a link between vaccines and autism. Decades of scientific studies, though, have debunked this idea.
SUMMERS: So here's a question. I mean, is this project even doable? Can the NIH really bring together all of these different data sources in some sort of coherent manner?
HAMILTON: It is a big challenge. In the U.S., health and medical information is scattered across lots of different public and private entities, and those entities don't really talk to one another.
SUMMERS: Right.
HAMILTON: I spoke with Dr. David Mandell, a professor of psychiatry at the University of Pennsylvania. He says even if the NIH got all the data in one place, it probably wouldn't lead them to a specific cause, like exposure to a drug or a toxic chemical.
DAVID MANDELL: The exposure is probably in utero, and one of the challenges with this dataset is it looks like we're studying children after they're born. And we are going to miss probably the critical exposure period.
SUMMERS: How are autistic people and their families, their loved ones, reacting to this? Is there concern about them being in some sort of registry?
HAMILTON: There is. This is really sensitive information, so they worry about it somehow becoming publicly available. Also, many of the people in the autism community are pretty wary of Secretary Kennedy. Mandell says that's partly because in public, he has focused on the relatively small number of people who have severe autism and are very disabled.
MANDELL: Both parents and autistic people have been horrified by the language that's being used to describe autism and the characterization of autistic people as useless and a burden to society.
SUMMERS: Last thing, Jon. When is this initiative expected to begin?
HAMILTON: The NIH director wants some version of the registry to be up and running within six months. That's super ambitious. And there is concern that moving too fast could result in some kind of data breach.
SUMMERS: That's NPR's Jon Hamilton. Thank you so much.
HAMILTON: My pleasure. Transcript provided by NPR, Copyright NPR.
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