Health and Human Services Secretary Robert F. Kennedy Jr. has long been known for his unproven and fringe views, including attempts to link autism to factors such as vaccines without evidence.
Now, a new plan to gather and analyze patient data from various sources across the country as part of a massive autism study is raising alarm bells from those who worry it will fuel misinformation and could be used for nefarious purposes.
Compiling data and creating a new registry for autism
CBS News reported that the National Institutes of Health, which operates under the Department of Health and Human Services, announced earlier this week that it would compile patient data relating to autism from a wide variety of sources to facilitate a study of the causes of autism Kennedy previously announced. The new database will combine data from private sources such as testing labs and pharmacy chains with patient information from government agencies such as the Department of Veterans Affairs and the Indian Health Services, as well as possibly sourcing patient data from Medicaid and Medicare.
The government will additionally create a new registry that it will use to track people with autism, which will be integrated into the larger database. Between 10 and 20 groups of researchers, coming from outside the government but chosen by NIH, would be granted access to this data to conduct research into the causes of autism. NIH Director Dr. Jay Bhattacharya touts the effort as a way to do unprecedented research on autism, as well as an opportunity to streamline access to data that is often hard to obtain or cross-reference. Bhattacharya also promises that “state of the art protections” would be put in place to protect patients’ confidentiality.
Fear and skepticism over RFK Jr. and the government’s intentions
Despite assurances that the data will be used carefully and securely, this new plan has raised serious concerns about the intentions of this new database and “autism registry.” Kennedy has long pushed notions that there has been a massive spike in autism cases, making the idea that environmental factors and vaccinations are largely to blame despite a lack of scientific evidence for these proposals. Recently, Kennedy rejected the thought that increased diagnoses come from more comprehensive testing and expanded definitions of autism. He also offended many people with his negative depiction of people with autism as people who would never do basic activities like date, play sports or hold jobs.
People with autism and skeptics of government overreach have raised alarm bells about the new registry and its potential for misuse.
“As an autistic adult, I admit this makes me uncomfortable,” one person wrote on X, formerly Twitter. “It’s committing mass HIPAA violations on behalf of a public eugenicist who sees autism as something to be ‘cured.'”
Another said, “Autism registers can and will be used against autistic people to deny agency and care,” adding, “This is a terrible idea.”
Some have even raised concerns that the registry could be used for eugenic policies, pointing to past regimes that have forcibly sterilized or even killed people with disabilities and others labeled “undesirable.”
With plans moving ahead to create the new autism registry and consolidated health database, it remains to be seen how this newly amassed data will be used or misused. But the views of the people gathering the data and the potential for abuse are already raising major red flags about this unprecedented use of Americans’ health information.
