Washington pushes expansive health data collection as privacy safeguards lag
The U.S. government is intensifying efforts to gather medical records both domestically and abroad, while existing privacy rules and anonymization methods prove inadequate.
Health and Human Services Secretary Robert F. Kennedy, Jr. has been courting state health information exchanges to obtain detailed medical records for a vaccine-autism study, aiming for coverage of up to 90% of Americans by 2028. HIPAA, the primary privacy statute, limits itself to covered entities and permits numerous disclosures without patient approval, leaving data from mobile apps, DNA kits and wearables unprotected.
Studies published in 2026 demonstrate that removing identifiers does not reliably shield individuals, with AI-driven membership-inference attacks especially endangering under-represented patients. Abroad, the State Department has conditioned large aid packages to countries such as Uganda and Kenya on access to their citizens' health databases, a practice critics label digital colonialism. Experts argue that while health data can advance public-health goals, the current lack of robust safeguards and transparency makes the expanding collection risky for privacy and security.
Why it matters
Expanding health data collection threatens personal privacy and could enable misuse of sensitive information.
In this story
