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Experts denounce RFK Jr.'s autism claims
A Department of Health and Human Services authoritative said Friday that the wellness section is not creating an autism registry, contradicting an announcement made days agone by the manager of the National Institutes of Health describing his plans to survey causes of autism.
"We are not creating an autism registry. The real-world information level volition nexus existing datasets to enactment probe into causes of autism and insights into improved attraction strategies," an authoritative for the section told CBS News successful an emailed statement.
The plans outlined by NIH Director Dr. Jay Bhattacharya to amass a wide swath of confidential wellness data, arsenic portion of Health and Human Services Secretary Robert F. Kennedy Jr.'s autism probe effort, person been the taxable of aggravated disapproval successful caller days by advocacy groups and autism researchers.
Some providers diagnosing and treating radical with autism person been deluged by requests to scrub their information and cancel appointments, aggregate national wellness officials told CBS News, implicit concerns astir diligent privateness and worries it would beryllium utilized to enactment unfounded claims.
News of the HHS reversal contradicting Bhattacharya was archetypal reported by STAT News.
The NIH manager antecedently said, arsenic portion of a presumption to a gathering of the agency's extracurricular advisers astir the effort, that the NIH would beryllium "developing nationalist illness registries, including a caller 1 for autism" to beryllium integrated into a caller "data platform" to survey autism and different chronic diseases.
The HHS authoritative did not accidental whether Bhattacharya initially misspoke oregon explicate wherefore his program was reversed. Bhattacharya did not respond to a petition for comment. HHS has not responded to a CBS News petition for an interrogation with Bhattacharya astir the registry.
Some $50 cardinal volition beryllium invested successful the probe effort, which includes the information platform, the HHS official's connection said, which is "aimed astatine knowing the causes of ASD [autism spectrum disorder] and improving treatments by leveraging large-scale information resources and fostering cross-sector collaboration."
According to the official, the NIH inactive plans to research partnerships with different national agencies, including the Centers for Medicare and Medicaid Services, "to facilitate a broad real-world wellness dataset that maintains the highest standards of information and diligent privateness portion supporting probe into autism and different areas specified arsenic chronic diseases."
In a connection to CBS News, the NIH said its "secure information repository" would "analyze large-scale, de-identified data" for autism and chronic diseases, akin to the agency's cancer database. The autism probe would "be afloat compliant" with national privateness laws and regulations, the bureau said.
"These efforts are not astir tracking individuals. All NIH-managed databases travel the highest standards of information and privacy, with the extortion of idiosyncratic wellness accusation arsenic a apical priority," the NIH said.
The HHS connection marks the latest alteration to Kennedy's autism probe effort successful caller weeks, since helium archetypal announced the propulsion astatine a White House gathering earlier this month.
Bhattacharya told reporters earlier this week that helium anticipated assistance backing for the autism probe would "hopefully" beryllium awarded by September. That is aboriginal than the initial timeline outlined by Kennedy, who has said that "by September, we volition cognize what has caused the autism epidemic."
"It's hard to warrant erstwhile subject volition marque an advance. It depends on, you know, quality has its say," Bhattacharya has said.
Alexander Tin is simply a integer newsman for CBS News based successful the Washington, D.C. bureau. He covers national nationalist wellness agencies.
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