The National Institutes of Health (NIH) will begin work on a comprehensive federal database of patient records to study autism and chronic disease, Director Jay Bhattacharya announced Monday.
The commitment gives legs to Department of Health and Human Services (HHS) Secretary Robert F. Kennedy Jr.’s calls to find the root cause of childhood autism, which he calls an epidemic. The NIH appears poised to put federal resources to work to create a central, shareable resource for the researchers that undertake RFK Jr.’s call to action.
Last week at an event with reporters, Secretary RFK Jr. announced that HHS will soon be offering research grants for identifying the cause of autism, including exploring causes that were formerly considered taboo by the research community. “People will know they can research and follow the science no matter what it says, without any kind of fear that can be censored ... gaslighted ... silenced," he told reporters.
The NIH will now work to build out a data resource consisting of medical records, insurance claims and data from wearable devices to aid autism researchers in their quest to find the root cause of the disease. Bhattacharya explained the initiative to a meeting of NIH advisors on Monday.
The NIH will partner across the HHS and with external stakeholders. The data sources for the real-world data platform will be pharmacy chains, health organisations, clinical data, claims and billing, environmental, sensors and wearables.
The initiative has sparked some privacy concerns from industry groups.
"Compiling health and disability-related data from both federal and commercial sources to create a federal registry of people with autism, without individuals’ consent, is the latest dangerous effort by this Administration to repurpose Americans’ sensitive information for unchecked government use," Ariana Aboulafia, project lead of disability rights in technology policy at the Center for Democracy and Technology, said in a statement. "This plan crosses a line in the sand, particularly given longstanding and historical concerns surrounding the creation of registries of people with disabilities.
"The data that would be used to create this registry and inform governmental studies on autism was originally shared with government agencies and private companies, like insurers and wearable technology companies, for a wide range of purposes," Aboulafia said. "It’s unclear exactly who the federal government plans to share this data with, or how they’ll eventually use it. And, while NIH has claimed that the confidentiality of this information will be safeguarded using 'state of the art protections,' it’s also unclear if it’ll be anonymized or disaggregated, or how it will be protected from a hack or breach."
Source: Fierce Healthcare, 22 April 2025
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