Robert F. Kennedy Jr.'s appointment as Secretary of Health and Human Services has sparked anxiety among autistic advocates due to his history of promoting anti-vaccine beliefs. His proposed initiative aims to fast-track research into autism's causes and potential treatments, but the use of the term "registry" raised urgent concerns, as past registries have led to human rights abuses against disabled individuals. Following backlash, the Department of Health and Human Services backed away from the registry terminology, redefining the initiative as a "real-world data platform" intended for research purposes, which still raises significant privacy concerns among disability advocates.
The alarming use of "registry" in the NIH's autism research initiative raised fears of historical human rights violations against disabled individuals, prompting an urgent clarification from the Department of Health and Human Services.
The Department of Health and Human Services described its autism initiative not as a registry, but as a "real-world data platform" aimed at linking datasets for better understanding and treatment of autism.
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