Kennedy Defends Autism Registry; Senators Press on Privacy, Staffing and Hiring of Controversial Contractor

At the Senate HELP Committee hearing, Secretary Robert F. Kennedy Jr. defended the creation of an autism research registry and described it as a voluntary, depersonalized database intended for scientists studying etiology and treatments.

Kennedy said the registry is "entirely voluntary," will protect patient privacy through de-identification and allow participants to opt out. He framed registries as common public-health tools that assist researchers in understanding disease progression and treatment outcomes. (Robert F. Kennedy Jr.)

Senators raised concerns about privacy and the hiring or use of outside contractors. Senator Josh Hawley and others pressed Kennedy about David Geyer, an outside consultant whom some senators and witnesses have alleged was involved in unauthorized medical practice in a separate state proceeding. Kennedy said Geyer was engaged by an independent contractor to review vaccine safety data in the Vaccine Safety Datalink (VSD) because Geyer had unique knowledge: "He is the only living independent scientist who's seen the VSD inside," Kennedy said, and that Geyer was used to help determine whether records conformed with what he observed between 2002 and 2016. Kennedy said Geyer was not hired as an HHS employee nor to run autism research. (Robert F. Kennedy Jr.)

Senators said they will pursue document requests and further oversight to verify privacy protections, roles of contractors and to ensure the registry is implemented with clear safeguards.

Why it matters: Registries can accelerate research but carry privacy risks. Senators asked for clear privacy protections and documentation about who will access sensitive data and under what controls.

The committee requested written records and Kennedy agreed to respond and to clarify the registry's opt-in/opt-out mechanics and data-protection measures.