An open letter to the U.S. Congress

Stop the Expansion of AI-Driven Medical Surveillance

142 so far! Help us get to 250 signers!

I urge you to oppose the Trump administration’s expanding effort to collect, combine, and analyze Americans’ medical information without clear consent, meaningful congressional oversight, or enforceable limits on its use. Health and Human Services Secretary Robert F. Kennedy Jr. has described a nationwide system linking Medicare and Medicaid claims, electronic health records, vaccination and pharmacy data, laboratory results, insurance information, environmental exposures, and wearable-device data. At a recent event hosted by the MAHA Institute, he said these records should be shared with independent researchers and searched by artificial intelligence. He specifically emphasized using linked data to investigate vaccines, autism, mortality, and other health outcomes. This is not merely a hypothetical proposal. HHS and the National Institutes of Health have already announced a pilot using Medicare and Medicaid information to study autism and chronic disease. Officials initially described a national autism registry, then retreated to the narrower term “real-world data platform.” More recent reporting indicates that HHS is seeking access to state health-information exchanges, including detailed records that may contain doctors’ notes, prescriptions, diagnoses, and claims. Nebraska’s exchange has reportedly shared data for federal vaccine and autism research, while other states have resisted because of consent, legal, and ethical concerns. The administration has not provided adequate public answers about who will access these data, whether patients can opt out, how researchers will be vetted, how long information will be retained, or what protections will prevent reidentification, commercial exploitation, law-enforcement access, or misuse after a breach. De-identification is not a guarantee of anonymity when records contain combinations of age, location, dates, diagnoses, and treatment history. The scientific premise also demands scrutiny. Kennedy continues to promote investigations into a vaccine-autism connection that extensive research has rejected. AI can identify correlations, but it cannot turn a politically favored hypothesis into reliable evidence. Research involving autistic people must respect their autonomy, dignity, and participation rather than treating them as subjects of a government surveillance project. Please use your authority to require transparent hearings, independent scientific and civil-rights review, informed consent wherever feasible, strict data minimization, enforceable access limits, public reporting, and a prohibition on law-enforcement or commercial use. Withhold funding for any expansion that lacks these safeguards. Americans’ medical records belong under democratic oversight, not in an opaque system driven by ideology and searchable by artificial intelligence.

Want candidates running for office to hear where you stand? Stop Warrantless Surveillance and Reform Section 702 and FISA on Amendment →

▶ Created on September 30 by Let My People Go

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