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4mo ago

RFK Jr.'s Autism Data Initiative Faces Intensifying Privacy and Ethics Concerns

The $50 million project to link health datasets is moving forward despite backlash over potential misuse, privacy risks, and controversial rhetoric.

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

  • HHS continues its $50 million effort to consolidate federal and private health data into a centralized platform, rejecting claims it is creating an autism registry.
  • Critics, including autism advocates, warn the initiative may revive debunked vaccine-autism theories and stigmatize autistic individuals.
  • Privacy concerns grow as some patients request the removal of personal data from medical records, fearing misuse in the research project.
  • Kennedy's appointment of controversial figures like David Geier to the initiative has heightened skepticism about the integrity of the research process.
  • Kennedy's remarks about autistic individuals, emphasizing severe cases, have drawn accusations of harmful rhetoric and echoes of eugenics.