The National Institutes of Health (NIH) is set to begin gathering private health records from Americans. This initiative is part of Health and Human Services Secretary Robert F. Kennedy Jr.’s contentious plan to identify the causes and potential cures for autism. NIH Director Jay Bhattacharya outlined the plan to a panel of experts earlier this week.
The NIH intends to collect data from various private sources, including pharmacy chains, hospitals, and devices equipped with health sensors, such as smartwatches. Bhattacharya explained to the panel, as reported by The Guardian, that the current data resources are fragmented and often challenging to access. He added that the NIH sometimes incurs multiple costs for procuring the same data, and even data within the federal government can be difficult to access.
The NIH did not respond to requests for comments on the matter.
Kennedy has prioritized autism research, despite having made unsubstantiated claims about childhood vaccinations potentially causing autism. This perspective is contrary to a substantial body of evidence. Earlier this month, Kennedy referred to autism as an epidemic and vowed to identify an environmental toxin responsible for the disorder.
He expressed intent to rapidly provide answers to the American public about autism’s increasing prevalence. According to the Centers for Disease Control and Prevention, autism prevalence in the U.S. has indeed risen, but experts suggest that this is primarily due to more comprehensive screening practices. Additionally, it is believed that no single factor determines an autism diagnosis.
In response to the plan, concerns have been raised by various experts. Zachary Warren, a researcher at Vanderbilt University, mentioned the complexity of factors potentially influencing autism presentation. Bhattacharya, meanwhile, suggested that the timeline for preliminary results might be extended to about a year, rather than the initially projected September deadline.
The NIH’s plan has raised privacy concerns among disability and data protection advocates. New York State assemblyman Angelo Santabarbara criticized the proposal as a threat to privacy. Similarly, Sara Geoghegan from the Electronic Privacy Information Center raised alarms about the departure from privacy norms and questioned the data protection measures.
Andrew Crawford from the Center for Democracy and Technology echoed these privacy concerns, noting a pattern of the federal government seeking access to sensitive personal data. The administration’s actions have drawn parallels to the unprecedented access granted to certain government sectors to Americans’ personal information.
