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3d ago

HHS Denies Autism Registry Plans, Advances $50M Data Platform for Research

The initiative aims to consolidate diverse health data to accelerate autism research, but privacy and ethical concerns persist.

WASHINGTON, DC - APRIL 22: National Institutes of Health Director Jayanta Bhattacharya (R), accompanied by Health and Human Services Secretary Robert F. Kennedy Jr. (L) and Food and Drug Administration Commissioner Marty Makary (C), speaks during a news conference at the Health and Human Services Department on April 22, 2025 in Washington, DC. Kennedy and Makary spoke about the intent of the FDA "to phase out the use of petroleum-based synthetic dyes in the nation's food supply." (Photo by Andrew Harnik/Getty Images)
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U.S. Attorney General Pam Bondi speaks during a meeting of the Eradicating Anti-Christian Bias Task Force, at the Justice Department in Washington, D.C., U.S., April 22, 2025. REUTERS/Ken Cedeno

Overview

  • HHS confirmed it is not creating a standalone autism registry but is developing a real-world data platform to support autism research.
  • The NIH has allocated $50 million to the initiative, which will integrate data from federal and private sources, including wearable devices and electronic health records.
  • Advocacy groups and experts have raised concerns about data privacy, consent, and potential misuse of sensitive health information.
  • HHS Secretary Robert F. Kennedy Jr.'s directive to identify autism causes by September has drawn skepticism due to its ambitious timeline and his controversial past views on autism and vaccines.
  • NIH Director Dr. Jay Bhattacharya emphasized the platform's potential to advance autism research while addressing concerns about patient confidentiality and data security.