Sat Apr 26 12:50:00 UTC 2025: **FOR IMMEDIATE RELEASE**

**Autistic Self Advocacy Network Raises Concerns Over Proposed Autism Database**

**Washington, D.C. – April 24, 2025** – The Autistic Self Advocacy Network (ASAN) is expressing serious concerns about a proposed autism database announced by the Department of Health and Human Services (HHS). While HHS has released additional information today, key questions remain unanswered, leaving ASAN deeply worried about the potential for misuse of sensitive personal data.

ASAN’s primary concern revolves around the protection of Personally Identifiable Information (PII). The organization emphasizes that if PII is included in the database without rigorous consent procedures and robust privacy protections, autistic individuals could face significant risks, including harassment, discrimination, and exploitation by fraudulent “cure” scams. While ASAN supports research using de-identified data, the lack of clarity regarding the database’s design and data sourcing fuels their apprehension.

The involvement of Robert F. Kennedy Jr. (RFK Jr.) and his reported choice of David Geier to lead the research further exacerbates ASAN’s concerns. Geier’s history of unethical practices, including operating a sham Institutional Review Board (IRB), raises serious doubts about the integrity and ethical conduct of the proposed study.

ASAN acknowledges community fears fueled by RFK Jr.’s rhetoric, but currently sees no evidence the database will be used for targeting individual autistic people. However, the organization stresses it will actively oppose any such misuse and will vigorously defend the rights of the autistic community.

ASAN is demanding transparency from the administration and is pursuing multiple avenues to secure answers about the database’s design, data collection methods, and consent protocols. The organization is calling for rigorous informed consent practices, comparable to those used in the long-running Framingham Heart Study, to ensure the ethical conduct of any research involving this sensitive data. The organization believes this is critical given the administration’s track record of prioritizing its agenda over civil rights and its past disregard for the privacy of vulnerable communities. ASAN remains committed to advocating for the ethical treatment of autistic individuals and protecting their rights.

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