The National Institutes of Health (NIH) is assembling one of the largest collections of private medical records in U.S. history at the request of Health and Human Services Secretary Robert F. Kennedy Jr., who has made autism research a cornerstone of his agenda.
The sweeping initiative will combine prescription histories, genomic data, insurance claims, and even fitness tracker metrics—creating an unprecedented research platform to study autism spectrum disorders.
The project, announced by NIH Director Dr. Jay Bhattacharya, aims to overcome long-standing barriers in medical research by merging fragmented data from Veterans Affairs, Indian Health Services, pharmacy chains, and private insurers.
Up to 20 external research teams will receive access to the trove—though they cannot download raw records—with Kennedy promising initial findings as early as September, despite scientists cautioning that complex autism research requires more time.
Privacy advocates have raised alarms about the consolidation of sensitive health data, particularly given Kennedy’s controversial history of promoting debunked vaccine-autism theories. While NIH officials vow “state-of-the-art” security protections, the initiative’s rapid rollout and Kennedy’s involvement have intensified scrutiny.
If successful, the platform could later expand to study other chronic diseases, potentially transforming public health research—if ethical and scientific concerns can be addressed.
