In a new move to combat the rise of autism in the United States, the National Institutes of Health is now collecting private medical records from various federal and commercial databases to share with Health and Human Services Secretary Robert F. Kennedy Jr. for his new efforts to study autism. This will help the government track Americans with autism and trace their medical journey.
This new act has raised a furious backlash against Kennedy Jr.'s actions, with many claiming that he is creating an "autism registry."
RFK Jr.'s steps towards autism
According to NIH director Dr Jay Bhattacharya, the data in the registry will allow external researchers selected for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the US population for the first time.
"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," he said in a presentation to the agency's advisors.
Bhattacharya also shared that data from medication records held by pharmacy chains, private insurer claims and smartwatches would be linked to the autism study. Patient data collected by the Department of Veterans Affairs and Indian Health Service will also be used in the study.
Alongside all this, he assured that patient confidentiality would be protected, which has raised a lot of eyebrows in the states.
Social media backlash
People on social media have been criticising RFK Jr.'s plans for the autism registry severely. "The Autism registry is one of the most outrageous examples of government overreach of my lifetime. Disgusting" wrote a user on X. "Starting a “disease registry” to identify disabled people is EXACTLY how the Nazi Euthanasia Program worked - it just wasn’t limited to one disability. RFK Jr. is a eugenist and you can’t convince me otherwise." added another.
Many also have a problem with the formation of the registry tracking people's medical history without their consent. "RFK Jr.'s autism registry is a chilling overreach, tracking private medical data without consent violates HIPAA and echoes eugenics. It’s not about health; it’s about control. Stop this now" wrote an X user.
Earlier this month, Kennedy Jr. said autism is a rapidly growing epidemic in the US. He emphasised his contention that "environmental" toxins are the cause of autism rates increasing in the US and he shared his plans to deal with the rising problem with initiatives to discover such purported causes.
This new act has raised a furious backlash against Kennedy Jr.'s actions, with many claiming that he is creating an "autism registry."
RFK Jr.'s steps towards autism
According to NIH director Dr Jay Bhattacharya, the data in the registry will allow external researchers selected for Kennedy's autism studies to study "comprehensive" patient data with "broad coverage" of the US population for the first time.
"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," he said in a presentation to the agency's advisors.
Bhattacharya also shared that data from medication records held by pharmacy chains, private insurer claims and smartwatches would be linked to the autism study. Patient data collected by the Department of Veterans Affairs and Indian Health Service will also be used in the study.
Alongside all this, he assured that patient confidentiality would be protected, which has raised a lot of eyebrows in the states.
Social media backlash
People on social media have been criticising RFK Jr.'s plans for the autism registry severely. "The Autism registry is one of the most outrageous examples of government overreach of my lifetime. Disgusting" wrote a user on X. "Starting a “disease registry” to identify disabled people is EXACTLY how the Nazi Euthanasia Program worked - it just wasn’t limited to one disability. RFK Jr. is a eugenist and you can’t convince me otherwise." added another.
Create an Autism Registry so people will be WAY less likely to get diagnosed & (more importantly) their children so they don’t end up on a Gov’t list. The numbers will drastically decrease. Problem solved because of the pseudo-scientific magic thinking cure they initiated pic.twitter.com/ZKXkTzEoBh
— Marcus NyXe (@marcusnyce) April 23, 2025
@rfkJrHealth24 wants a registry of people with autism. He's hired an anti-vaxxer to study the causes autism. HEY JR! HAVE YOU HEARD ABOUT HIPAA LAWS?? YOU HAVE NO RIGHT TO PRIVATE MEDICAL RECORDS!!!
— Doris Honors With Action! 🌊🌊🌊💙💙💙 (@screaminglibral) April 23, 2025
Reminder: the Nazis made lists, too. #HandsOff #DemsUnited pic.twitter.com/JslRWYESJV
Many also have a problem with the formation of the registry tracking people's medical history without their consent. "RFK Jr.'s autism registry is a chilling overreach, tracking private medical data without consent violates HIPAA and echoes eugenics. It’s not about health; it’s about control. Stop this now" wrote an X user.
Earlier this month, Kennedy Jr. said autism is a rapidly growing epidemic in the US. He emphasised his contention that "environmental" toxins are the cause of autism rates increasing in the US and he shared his plans to deal with the rising problem with initiatives to discover such purported causes.
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