Article Summary:
The Department of Health and Human Services (HHS), under the leadership of Robert Kennedy, has announced a partnership between the Centers for Medicare & Medicaid Services (CMS) and the National Institutes of Health (NIH) to create a “real-world data platform” to study autism. This data-sharing plan would utilize information from Medicare and Medicaid enrollees with an autism spectrum disorder (ASD) diagnosis, including claims data, electronic medical records, and data from consumer wearables.
The agencies involved have emphasized compliance with privacy and security laws, but some remain concerned about how this sensitive information will be handled. The announcement comes amid contradictory statements from the agencies regarding an “autism registry.” Initially, the NIH expressed intent to gather private medical records of individuals with autism from various databases, including medication records, lab records, and fitness tracker data. This proposal was met with immediate public backlash, leading HHS to state that there would be no such registry.
However, the newly announced partnership, while not using the term “registry,” is still viewed with skepticism by some, who see it as a “registry without the word ‘registry’ in it.” Concerns have been raised about the potential misuse or misappropriation of the data, as well as the administration’s perceived lack of understanding and support for the autism community. The Autistic Self Advocacy Network (ASAN) has expressed distrust in the initiative, citing the administration’s previous statements and actions regarding autism, and has called for clear answers, an apology, and opportunities for the autistic community to advocate for their own needs.
Article Excerpt:
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said in a statement, though autism is not, in fact, a disease.