The National Institutes of Health (NIH) is set to initiate the collection of Americans’ personal health records as part of a plan spearheaded by Health and Human Services Secretary Robert F. Kennedy Jr. This controversial initiative aims to identify a cause and potential cure for autism. NIH Director Jay Bhattacharya presented the plan to a panel of experts earlier this week.
The NIH intends to gather data from a diverse array of private sources, including pharmacy chains, hospitals, and wearable devices equipped with health sensors like smartwatches. Bhattacharya explained to the panel that the current data resources are often fragmented and challenging to access. He highlighted that the NIH frequently incurs multiple payments for the same data, even when such data resides within the federal government.
Kennedy has prioritized autism research in his role as a national health advocate. He has been known for making controversial, anti-science assertions, including claims that childhood vaccinations could result in autism, despite substantial evidence to the contrary. Earlier this month, he characterized autism as an “epidemic” and committed to identifying an “environmental toxin” responsible for the disorder by September. Kennedy stated that autism is increasing at an alarming rate and promised a swift response to provide answers to the American people. He referred to autism as a “preventable disease.”
The Centers for Disease Control and Prevention (CDC) reported an increase in autism prevalence in the United States, rising from 1 in 36 children five years ago to 1 in 31 children in 2022. Experts attribute this increase largely to enhanced screening processes. Experts also caution that no single factor is likely responsible for an autism diagnosis, suggesting that a multitude of neurogenetic factors combined with complex environmental interactions may influence autism presentations.
Bhattacharya, who has a controversial history in the medical community due to his early skepticism about the lethality of COVID-19 and his opposition to lockdown mandates, has reportedly revised the expected timeline for results. He indicated that while a target was initially set for September, a more realistic expectation might be preliminary results within a year. He emphasized that the unpredictability of scientific research makes it difficult to project a definitive timeline.
The autism study has already sparked criticism from disability and privacy advocates. Angelo Santabarbara, a New York State assemblyman and Democrat, criticized the plan in a statement, deeming it disrespectful to those with autism. He argued that the proposal poses a dangerous and unethical threat to privacy, asserting that individuals with autism deserve dignity and respect, not government surveillance. Santabarbara joined advocates across the nation in opposing the proposal.