PALM BEACH COUNTY, Fla. — WPTV is diving into the proposed creation by Robert F. Kennedy Jr., the U.S. Secretary of Health and Human Services, for a national registry dedicated to individuals on the autism spectrum.
The aim is to compile a comprehensive database of names and personal information through the National Institutes of Health (NIH) in order to study and try and find the causes and potential cures for the neurodevelopmental disorder.
WATCH: Meagan Lide shares parents' concerns of autism registry
Autism affects an estimated 1 in 31 children in the United States, a significant increase from the 1 in 150 prevalence reported just 25 years ago.
Kennedy believes that the rise in autism diagnoses is often misattributed to better recognition and changing diagnostic criteria, suggesting that there are deeper, yet-to-be-explored factors at play.
“We will have some of the answers by September,” Kennedy stated.
He indicated that the government would provide grants to university researchers.
Kennedy's approach aims to encourage scientists to pursue their inquiries without the fear of censorship or funding cuts, fostering an environment where discoveries can occur.
While the initiative sparks hope for potential breakthroughs in autism research, it has also raised significant concerns among parents, advocates, and medical professionals about privacy and the intended use of the collected data.
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Meagan Lide, who runs the Palm Beach Autism Club, expressed her apprehension.
“Parents that I’ve spoken to are on board with autism research, but they want it to be done in the right way," she said. "Their medical records deserve privacy, just like anyone else's.”
Lide fears that the initiative might be misused or fail to truly benefit individuals on the spectrum.
The proposed database would utilize medical records from various federal and commercial databases, aiming to broaden the scope and sample size of the research.
However, professionals like Jack Scott, the executive director of Florida Atlantic University’s Center for Autism and Related Disabilities (FAU CARD), stress the need for assurances regarding data security and privacy.
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“I think Americans are naturally suspicious of sharing too much information,” Scott said, emphasizing the importance of a transparent and comprehensive plan to protect personal data.
Another pressing concern surrounding the registry is the potential for stigmatization of individuals with autism.
“It could potentially be used to stigmatize people, and that would be a problem," Scott commented. "Most parents would probably rather see more genuine support and appropriate services.”
FAU CARD has their database of over 4,500 families from the Treasure Coast through Palm Beach County, according to Scott.
It's required by the state to document that they're serving people appropriately and so FAU CARD can better connect resources to individuals.
FAU CARD families are able to opt out of the registry.
When asked if that list could be subject to the NIH's registry collection, Scott said it would most likely depend on state orders, or FAU attorneys.
