(NewsNation) — Robert F. Kennedy Jr. plans to collect the private health records of Americans with autism to create a database in order to help find the cause of autism, according to the head of the National Institutes of Health, CBS reported Monday.
NIH Director Dr. Jay Bhattacharya, a critic of COVID lockdowns and vaccine mandates, announced during a public meeting Monday that the health department would launch an initiative called “Understanding ASD (Autism Spectrum Disorder ): Integrating diverse data enabling researchers to examine complex factors influencing ASD rates.”
“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain,” Bhattacharya said.
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How will RFK Jr.’s NIH collect autism data?
According to Bhattacharya’s slide presentation, the data would come from private and public data, including lab testing, records from pharmacy prescriptions, data from fitness trackers and smartwatches, private insurance claims and genomics records of the patients from the Department of Veterans Affairs and Indian Health Service.
The head of the NIH said that while private data will be used for research, it will not be downloaded, and “state-of-the-art protections” will be put in place to ensure confidentiality.
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“What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,” Bhattacharya said.
Concerns about RFK Jr.’s NIH autism data collection
Christopher Banks, CEO of the Autism Society of America, told NewsNation that his organization has “deep concerns” about NIH collecting and potentially misusing personal health data.
“The Autism Society emphasizes that robust safeguards must be in place to protect individuals’ privacy and stress that compliance with HIPAA laws and clear communication about how data will be used are essential. Our position strongly implies that the database, as currently proposed, risks breaching individual privacy,” Banks said.
During Bhattacharya’s confirmation hearings, Sen. Bill Cassidy, a Louisiana Republican who chairs the Senate health committee, implored him not to use NIH dollars to reexamine whether there is a link between childhood vaccines and autism.
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Sofia Karstens, who was the treasurer of the Common Sense PAC which supported Kennedy’s bid for president, argued that “gold-standard scientific study requires proper cohort studies and proper surveillance.”
“Surveillance doesn’t mean there is someone sitting in a room looking at your personal medical records; they’re not going to be violating patient privilege or privacy. It means capturing signals properly so we know where to look for potential environmental insults. We need to follow the uncaptured science,” Karstens said.
RFK Jr. wants to find autism epidemic cause by September
Kennedy stated earlier this month that, “By September, we will know what has caused the autism epidemic, and we’ll be able to eliminate those exposures.”
However, Bhattacharya tempered that expectation Tuesday.
“We’re going to get hopefully grants out the door by the end of the summer, and people will get to work. We’ll have a major conference, with updates, within the next year,” he said.
