NIH to Collect Americans’ Private Health Data in Push for Autism ‘Cure’ Under RFK Jr.
WASHINGTON — The National Institutes of Health will begin amassing Americans’ private health records,including data from pharmacies,hospitals,and wearable fitness trackers,as part of a controversial initiative spearheaded by Health and Human Services Secretary Robert F. Kennedy Jr. to uncover the cause and a cure for autism, NIH director Jay Bhattacharya announced this week.
Bhattacharya unveiled the plan to a panel of experts, outlining a sweeping effort to consolidate fragmented data resources into a centralized platform. He told the panel that the NIH often pays multiple times for the same data resource, and it struggles to obtain data resources, even those within the federal government, according to The Guardian.
The move has already ignited debate within the medical and scientific communities, given Kennedy’s history of spreading misinformation about vaccines and his stated goal of finding a single “environmental toxin” responsible for autism.
Kennedy has long pushed theories,debunked by numerous studies,that childhood vaccinations could cause autism. Earlier this month,he described autism as an “epidemic” and vowed to find an environmental toxin responsible for the disorder by September,now amended to a year.
“Overall autism is increasing in prevalence at an alarming rate,” Kennedy told reporters earlier this month. He further described autism as “a preventable disease.”
While the Centers for Disease Control and Prevention did report that autism prevalence in the United States has increased from 1 in 36 children five years ago, to 1 in 31 children in 2022, experts say this is largely due to more thorough screening across a broader population.
Many experts caution that autism is a complex neurodevelopmental condition with a wide range of genetic and environmental factors likely contributing to its development.
“We may have hundreds, if not thousands, of different neurogenetic factors that in combination with complicated environmental interactions influence presentations of autism,” zachary Warren, a pediatric psychiatrist and autism researcher at Vanderbilt University, told NPR earlier this month.
The NIH’s decision to collect vast amounts of private health data raises concerns about privacy and security. The agency has not yet detailed the specific measures it will take to protect Americans’ sensitive information.
Bhattacharya himself has faced scrutiny for his past statements questioning the lethality of COVID-19 and his opposition to lockdown measures.
The NIH did not return a request for comment.
