An open letter to the U.S. Congress

Scrutinize privacy concerns over proposed national autism registry

16 so far! Help us get to 25 signers!

Robert F. Kennedy Jr.'s plan to launch a national autism registry using Americans' private medical records raises significant privacy and ethical concerns. Compiling individuals' confidential health information, including data from pharmacy chains, lab tests, smartwatches, and insurance claims, without explicit consent could be a violation of HIPAA laws protecting patient privacy. Tracking people based solely on their neurodivergent condition is discriminatory and stigmatizing. Any research should be conducted with full transparency, consent from participants, and strict data protection protocols in place. The potential exploitation of vulnerable groups' private information for questionable motives must be scrutinized. I urge a comprehensive review of the legal and ethical implications of this proposed registry before proceeding.

▶ Created on April 23 by Allison

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