Health Secretary Robert F. Kennedy Jr. announced on Wednesday plans for a new “real-world platform” aimed at advancing autism research through the analysis of insurance claims, electronic medical records, and data from wearable devices. The initiative will involve collaboration between the health department, the National Institutes of Health, and the Centers for Medicare and Medicaid Services, utilizing records from Medicare and Medicaid, which cover approximately 40 percent of Americans.
The announcement follows a period of concern among researchers, advocates, and parents regarding privacy issues related to a previously proposed autism registry. Governor JB Pritzker of Illinois responded to these concerns by issuing an executive order to protect the privacy rights of state residents with autism, highlighting national apprehensions about the creation of federal autism registries without adequate legal protections.
Mr. Kennedy's focus on autism research stems from his controversial stance linking vaccines to the increasing rates of autism diagnoses in the U.S. Recent data from the Centers for Disease Control and Prevention indicates that about 1 in 31 American eight-year-olds have been diagnosed with autism.
While the health department pledged to protect medical data privacy, specifics on the type of research to be conducted remain vague. Mr. Kennedy stated that the platform would be used to uncover the root causes of autism and other chronic diseases. However, skepticism from experts persists, with some viewing the initiative as a registry in disguise, raising concerns about potential misuse of the data.
David Mandell, a professor at the University of Pennsylvania, expressed cautious optimism about the new platform but warned against the possibility of data being directed towards vaccine-related studies. The announcement also outlined various research priorities, including trends in autism diagnosis, effectiveness of treatments, economic impacts, and disparities in access to care.
Jill Escher, president of the National Council on Severe Autism, expressed mixed feelings about the announcement, agreeing on the urgency of autism research but advocating for a more systematic approach rather than what she described as “dart throwing without hypothesis building.”
As discussions surrounding autism continue, Mr. Kennedy's recent statements have sparked both support and backlash within the autism community, particularly after he claimed that the disorder is preventable, a notion that experts have refuted. His platform is intended to start as a pilot program for autism research, with plans to expand to other chronic conditions in the future.