An open letter to the President & U.S. Congress; State Governors & Legislatures

Halt unethical NIH personal health data collection program

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The National Institutes of Health's plan to collect Americans' private health data from sources like pharmacies, hospitals, and wearable devices for an autism study is a concerning violation of privacy. Gathering sensitive medical information without consent and compiling it into a centralized database raises significant ethical and legal questions. While research into autism is important, it should not come at the expense of people's fundamental right to privacy over their personal health records. This broad data collection effort represents a disturbing overreach by the federal government into citizens' private lives. There are strict laws and regulations in place to protect the confidentiality of medical records, and this proposal disregards those long-standing privacy safeguards. Pooling data from disparate commercial sources in this manner is inappropriate and an abuse of federal power. I urge you to take immediate action to halt this unethical NIH program and ensure robust privacy protections are in place for any future medical research initiatives. Americans deserve to have their personal health information treated with the utmost care and respect. The right to privacy must be vigorously defended against such government intrusions. Please act swiftly to address this critical issue and restore public trust in protecting civil liberties.

▶ Created on April 24 by People Who Value Science

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