1. United States
  2. N.Y.
  3. Letter

Halt Unethical Autism Study Violating Patient Privacy Rights

To: Rep. Velázquez, Sen. Gillibrand, Sen. Schumer

From: A constituent in Brooklyn, NY

April 21, 2025

The autism study led by Robert F. Kennedy Jr. raises serious ethical concerns by violating established requirements and protocols governing human subjects research. Obtaining comprehensive health data from various sources and integrating it into a platform for research without explicit informed consent and approval from an Institutional Review Board (IRB) is a flagrant breach of regulations. Conducting such a large-scale study on autism using personal medical information collected without proper authorization and oversight goes against ethical principles and norms designed to protect human subjects. This unilateral data collection and analysis likely violated NIH requirements mandating IRB approval and informed consent for research involving human participants. I strongly urge you to intervene and halt this study until it receives full ethical review and clearance, and until adequate safeguards are established to ensure voluntary participation and protection of individual privacy rights. Medical research, especially studies dealing with vulnerable populations, must uphold the highest ethical standards outlined in federal regulations.

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