RFK Jr.'s government autism registry is really frightening

President Donald Trump weighed in recently on what causes autism and his analysis is just wrong. He said, contrary to what science knows, that autism "has to be artificially induced." This is code for "it has to be vaccines." Trump believes his eminently unqualified lead health officer, Health and Human Services Secretary Robert F. Kennedy Jr., is on the right track in continuing his debunked decades-long quest to link the rise in autism solely to vaccines.

Much of the autism community is in a panic. Not only due to the bogus hunt for linking vaccines to autism. But also because Kennedy and Trump see nothing but abject misery in the lives of autistic children. And the autism community has reason to be terrified given the history of how "disabled" people have been managed when their quality of life is ignorantly disparaged.

After a Centers for Disease Control and Prevention report found the prevalence of autism rising to 1 in 31 among 8-year-olds, Kennedy said he was aghast. He said "autism destroys families" and is an "individual tragedy as well." He added that many autistic children "regressed ... into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted." His final bashing of the autistic ended with his emotional assertion that, "Most cases now are severe."

Kennedy promised to find the "environmental toxin" responsible for the unmitigated misery he believes autism to be — by tracking every diagnosis of autism he can lay his hands on and linking that to personal medical records. The environmental cause of autism would be identified by the end of the year. Nearly the entire autism community recoiled in worry. Why? Because the disability community knows all too well what can happen when powerful government officials focus on those they deem miserable and a burden. It is sometimes forgotten that Hitler's extermination camps began with the roundup and murder of tens of thousands of mentally ill and physically disabled children and adults. The Nazis called them "mercy killings" of "useless eaters."

Many in the autism community are deeply concerned about where Kennedy might be headed. History rightly makes them wary.

Kennedy says he needs private medical information since he is keen to find a cause — almost certainly vaccines. But there is no need for such a project.

A 2017 Swedish study on autism that included 37,570 sets of twins, 2,642,064 full sibling pairs, and 877,812 half-sibling pairs — 14,516 of whom were diagnosed with a form of autism — found that diagnoses were clustered in families and that 90% were genetic.

Research over several decades shows autism stems from a combination of genetic and environmental factors. More than 100 genes have been identified as being associated with autism. Other risk factors include premature birth, older parental age, prenatal toxic metal exposure, and environmental pollution. Not on the list are Kennedy’s favorite cause, vaccines.

So what are Trump and Kennedy up to? We don’t need the study Kennedy proposes as he must know. Building a government-run registry using private information must be serving another purpose. History warns us that those purposes can be hugely dangerous for those with disabilities whom the government views as problems, not people with needs.

This guest essay reflects the views of Arthur L Caplan, head of the Division of Medical Ethics at NYU Grossman School of Medicine.