Roughly 36 percent of Americans are enrolled in Medicare or Medicaid, meaning their sensitive data could be targeted.
This week, the U.S. Department of Health and Human Services (HHS) announced plans to develop a “real-world data platform” using Medicare and Medicaid records to investigate “the root causes of autism.” The announcement comes after officials previously walked back statements about creating “national disease registries” to “track Americans with autism,” insisting that the Trump administration was not launching an autism registry.
However, on May 7, the National Institutes of Health (NIH) and the U.S. Centers for Medicare and Medicaid Services (CMS) unveiled a partnership allowing researchers to use the federal health insurance data of individuals diagnosed with autism spectrum disorder. With roughly 36 percent of Americans enrolled in Medicare or Medicaid, the platform could potentially include sensitive health information from a large portion of the U.S. population.
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” HHS Secretary Robert F. Kennedy Jr., who has long peddled false conspiracy theories about autism, said in a statement.
The announcement has sparked alarm among autistic people and disability advocates, many of whom fear inadequate safeguards for such sensitive data.
“CMS data includes certain information about individuals — age/date of birth, sex, where they live. It is possible to identify a person based on knowledge about these characteristics,” Helen Tager-Flusberg, director of the Center for Autism Research at Boston University and leader of the Coalition of Autism Scientists, told NPR.
Critics have raised particular concerns about the creation of what they see as a de facto federal registry of autistic people.
“Compiling health and disability-related data from both federal and commercial sources to create a federal registry of people with autism, without individuals’ consent, is the latest dangerous effort by this Administration to repurpose Americans’ sensitive information for unchecked government use,” Ariana Aboulafia, project lead of disability rights in technology policy at the Center for Democracy and Technology, said in a statement. “This plan crosses a line in the sand, particularly given longstanding and historical concerns surrounding the creation of registries of people with disabilities.”
Advocates have drawn historical parallels, noting that the Nazi regime targeted people with disabilities early on in its eugenics campaign. A Change.org petition protesting the plan — signed by nearly 50,000 people — warns: “We’ve seen this before — in history, in policy, in silence. And history tells us this: You don’t build a registry unless you plan to use it.”
Kennedy’s long history of promoting debunked and dangerous conspiracy theories about autism has intensified concerns. He has repeatedly pushed the false claim that autism is a “preventable disease” caused by childhood vaccines and environmental toxins, and has described autism as a condition that “destroys families.”
“Members of this administration have repeatedly used eugenic language to talk about people with disabilities…This makes the administration seem like a particularly untrustworthy locus for a registry to track autistic people,” the Autistic Self Advocacy Network (ASAN) said in a statement. “The disability community, and many other marginalized communities, have reasonable fears, based in both historical events and in current policy pursued by the administration, of any attempts to create lists of marginalized people.”
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