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Deep Dive: RFK Jr. Plans Autism Registry, Sparks Privacy Fears

Washington, D.C., USA
April 25, 2025 Calculating... read Health & Wellness
RFK Jr. Plans Autism Registry, Sparks Privacy Fears

Table of Contents

Introduction & Context

Autism diagnosis rates have risen five-fold since 2000, largely due to broader screening. Kennedy’s “autism is preventable” rhetoric taps parental anxiety but revives discredited vaccine myths.

Background & History

Past attempts at national health registries—like the 1970s cancer database—improved research but faced strict HIPAA safeguards. Kennedy’s expedited timeline raises questions about ethical review.

Key Stakeholders & Perspectives

Autism advocates see potential funding for services but fear misuse; epidemiologists doubt registry accuracy; civil-liberties groups warn of surveillance creep; tech firms supplying wearables eye lucrative data contracts.

Analysis & Implications

Large datasets can spotlight environmental factors, yet conflating correlation with causation risks policy misfires. Public backlash could chill legitimate autism research if trust erodes.

Looking Ahead

Congressional hearings on medical data rights start in May. Watch whether NIH publishes clear opt-out pathways and whether insurers balk at sharing claims without explicit member consent.

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