ASAN Gravely Concerned by Administration’s Plans for Autistic People’s Medical Data

ASAN is gravely concerned by Health and Human Services (HHS) Secretary Robert F. Kennedy Jr.’s (RFK Jr.) reported plans to establish a “registry” of autistic people and to hand over sensitive medical data about autistic people to unnamed researchers, likely without their consent. At present, so little information has been released about this plan that basic questions about how it will work remain unanswered. For example, we do not know how autistic people will be identified, whether personally identifying information will be culled from the collected data, what confidentiality protections there will be, or whether people will receive any notice...