RFK Jr.’s Autism Database Plan Sparks Outrage Over Privacy Concerns
The NIH, in collaboration with CMS, will create a database using Medicare and Medicaid data to research autism’s causes. This “real-world data platform” will link insurance claims, medical records, and data from wearable devices. The initiative aims to identify the root causes of autism and other chronic diseases, with autism serving as the initial focus. However, concerns regarding data privacy and potential misuse have been raised by privacy experts and the autistic community. Despite assurances of data protection, anxieties persist given past instances of data breaches and the HHS Secretary’s history of promoting unsubstantiated claims about autism.
John Q. Hosedrinker