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And the U.S. Health Department responding to criticism about plans to create a new registry of Americans with autism
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The department now says that they are not creating a traditional registry, but collecting data for a study to understand the cause of autism
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Fox News, Teresa Perillo is live in the newsroom. And Teresa, this is still getting a whole lot of backlash. Maybe you can explain why
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Yeah, it is certainly getting a lot of backlash, Bianca and Antoine. And it's also causing a lot of confusion, not only over the privacy concerns of a government-maintained registry
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but also over whether or not there will even be one in the first place
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So by the numbers, according to the CDC, in 2022, one in every 31 children was diagnosed with autism by age eight
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Autism rates are up every single year since 2000. The National Institutes of Health director initially said he wanted to create a registry to track autistic people
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It would pull from pharmacy records, private insurer claims, genetic testing, and even data from smartwatches
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The idea alone sparked a firestorm of panic and confusion in the autism, as well as broader research communities
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Now, HHS is saying they aren't creating a traditional registry, but rather a data platform that links data sets
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This plan was kind of put out there to create an autism registry with no details on specifics, right
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So no details on whether or not people would be asked for their information whether or not they would be able to give their permission whether or not privacy and confidentiality would be maintained So by itself a registry just to aggregate
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information is not a bad thing. But doing it in a way that violates people's privacy
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and their trust and then also could potentially expose them to that information divulging against
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their wishes is a bad thing. Now, the information was also supposed to be used for RFK Jr.'s autism
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study. Now, instead, HHS will launch a $50 million research effort to understand the causes of autism
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spectrum disorders and also improve treatments. I don't have a problem with that. I don't have
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a problem with people knowing about Trevor. And if Trevor's information can help somebody else
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that's what I'm all about. They're going to acquire this database and how they're going to create it and how it's going to be used in the future and how they can protect families' privacy
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So some states, like New Jersey, actually, have autism registries. In New Jersey, you can enter
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your data anonymously. So you can put in your personal information, like your child's name
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address, diagnoses. If you do that, you'll be offered and then directed toward service providers
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that can help with your child's care. The difference between that and what the feds were
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suggesting, New Jersey asks for your permission for that information and also allows you to be
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anonymous. The federal registry apparently did not. Bianca. All right, thank you for that
