1. United States
  2. Utah
  3. Letter

Urgent HIPAA Concerns Regarding Autism

To: Sen. Lee, Sen. Curtis, Rep. Kennedy

From: A constituent in Provo, UT

April 24, 2025

I hope this message finds you well. I am writing as a concerned Utah resident regarding the recent federal initiative, led by Secretary Robert F. Kennedy Jr. and NIH Director Jay Bhattacharya, to establish a national autism registry. This program proposes collecting deeply personal health data — including insurance claims, genomic data, and even smartwatch information — from state and private sources, often without individual consent. While the stated goal is to investigate environmental causes of autism, the methods raise serious constitutional and legal concerns. Specifically, I believe this initiative: •    Violates Fourth Amendment protections against unreasonable search and seizure; •    Infringes upon Fourteenth Amendment due process rights by collecting data without consent or notice; •    Conflicts with HIPAA regulations, which strictly govern the use and disclosure of personal health information; •    Represents a dangerous expansion of federal power into state-regulated public health data systems. Utah, with its existing autism registry, is uniquely positioned to take a leadership role in challenging this mandate. I strongly encourage your office to consider legal action — such as Utah v. Kennedy — to defend the rights of Utahns and push back against this alarming federal overreach. Thank you for your continued commitment to protecting the liberties and privacy of all Utah residents. I would be honored to support any steps your administration takes to address this critical issue.

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