Overview

• The National Institutes of Health (NIH) is moving forward with a national autism registry, aggregating private medical, commercial, and wearable-device data for research purposes.
• Privacy advocates and disability rights groups have raised concerns about the lack of clear opt-out mechanisms and data safeguards, calling for greater transparency and oversight.
• HHS Secretary Robert F. Kennedy Jr. has reignited debates by framing autism as an environmental epidemic and hiring controversial figures linked to discredited vaccine theories.
• NIH Director Jay Bhattacharya announced that 10 to 20 external research teams will analyze the data without direct download access, with preliminary findings delayed until 2026.
• Senator Susan Collins has requested detailed plans on data governance to ensure compliance with privacy laws and protection of individuals with autism.