The National Institutes of Health is quietly assembling a vast digital mosaic of Americans’ private medical histories, pulling sensitive data from both government-run health systems and commercial sources to support autism research tied to Health and Human Services Secretary Robert F. Kennedy Jr.’s latest project. The new scheme involves a sweeping plan to integrate diverse streams of health data into a single platform, raising significant concerns about privacy, oversight, and long-term use.
According to NIH Director Dr. Jay Bhattacharya, the data aggregation includes pharmacy transactions, insurance claims, clinical test results, and even personal metrics collected from wearable tech such as fitness trackers and smartwatches.
Health information from the Department of Veterans Affairs and the Indian Health Service is also being funneled in, creating a massive, centralized repository with a wide lens on the US population.
As Bhattacharya told agency advisers on Monday, the objective is to eliminate the fragmentation that currently limits access to existing health data sets. He said the new system would cut down on redundancies and make it easier for researchers to conduct large-scale analysis.
“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.
Hellbound and Down 