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HHS Autism Data Project Faces Privacy and Credibility Concerns

Kennedy's $50 million initiative to link health datasets has clarified it will not create a registry, but critics warn of privacy risks and potential bias in vaccine investigations.

U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. speaks with Director of the National Institutes of Health Jay Bhattacharya ahead of a press conference announcing of the U.S. Food and Drug Administration's (FDA) intent to phase out the use of petroleum-based synthetic dyes in the nation's food supply, at the Department of Health and Human Services in Washington, D.C., U.S., April 22, 2025. REUTERS/Elizabeth Frantz
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Overview

  • Health Secretary Robert F. Kennedy Jr. has launched a $50 million NIH-backed initiative to create a real-world data platform linking federal and private health datasets to investigate autism causes.
  • HHS has clarified that the project will not involve creating a registry of autistic individuals, emphasizing compliance with privacy standards under HIPAA.
  • Critics, including the Autism Self Advocacy Network, fear the data collection could be used to support discredited vaccine-autism theories, undermining public trust in the research.
  • Some health providers report an increase in patient requests to remove personal information from medical records, citing privacy concerns and potential misuse of data.
  • Kennedy's refusal to disavow debunked vaccine-autism links and the project's accelerated timeline have raised questions about scientific integrity and confirmation bias in the investigation.