NIH Autism Database Sparks Concern of Privacy Violations, Discrimination
May 31, 2025Six weeks ago, the autistic community sounded the alarm when U.S. Health and Human Services Secretary Robert F. Kennedy, Jr., called autism a “preventable disease” caused by unknown “environmental toxins,” and vowed to root out its causes within six months.
Shortly thereafter, the head of the National Institutes of Health (NIH) announced that it would begin amassing private medical records from commercial and federal databases, including those operated by the Centers for Medicare and Medicaid Services (CMS), to provide health data for Kennedy’s proposed autism study, according to NPR.This proposed NIH-CMS database would reportedly include information from wearable health devices, insurance claims, and online medical records.
An NIH official said, “The real-world data platform will link existing datasets to support research into causes of autism and insights into improved treatment strategies.”Kennedy initially said the NIH-CMS database would fuel a series of research studies to “identify precisely what the environmental toxins are that are causing” autism by September; he recently pushed back that date by six months or more.
Meanwhile, autism scientists, medical practitioners, and advocates have expressed concern and even outrage over Kennedy’s apparent dismissal of existing autism research and the recent resignation of a top NIH scientist who accused the Kennedy-run organization of research censorship.Though Kennedy insists the database is not an “autism registry,” privacy concerns remain high.
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United States
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Deaths: 750 423
Recovered: 0
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India
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Deaths: 459 652
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Brazil
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