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In Their Own Words
Why RFK Jr.’s Autism Research Agenda Raises Ethical Alarms
His data-driven initiatives risk violating consent, spreading stigma, and reviving vaccine misinformation, LDI Fellow writes.
The following excerpt was published on MedPage Today on June 18, 2025.
In early 2022, my daughter wrote a poem that likened the post-pandemic world to escaping a “canyon we’ve been trapped in for so long. All our tools lie broken behind us, yet we lift our voices to song.” Around that time, she was also diagnosed with autism spectrum disorder.
After the 2024 presidential election, my daughter told me that she was afraid people with autism would be “persecuted.” As her parent and as a bioethicist, I see her point when I consider HHS Secretary Robert F. Kennedy Jr.’s autism research agenda.
Kennedy is a well-known vaccine skeptic who has refused to say that vaccines do not cause autism even when confronted with compelling evidence no link exists. What he has said is that children with autism will “never pay taxes…never hold a job…never play baseball…never write a poem…never go out on a date. Many of them will never use a toilet unassisted.”
My initial reaction upon hearing this was to turn to my husband and say, “Really? They’ll never write a poem?” My second was to observe that people don’t have to work or write to have value, nor do they need to be in romantic relationships or even use the restroom without help to live good lives, lives they value.
In March, under Kennedy’s leadership, HHS hired David Geier — who has a history of conducting unethical research and who once was disciplined by the Maryland State Board of Physicians for practicing medicine without a license — to study the link between autism and vaccines. In April, HHS trumpeted the creation of a national autism registry that would combine data from public and private insurance claims, electronic medical records, pharmacies, laboratory and genetic tests, and consumer wearables. The plan was withdrawn in the face of substantial criticism from researchers, privacy experts, and the autistic community. Most recently, HHS announced the creation of “a real-world data platform” combining data from insurance claims, electronic medical records, and consumer wearables, and enabling research into the “root causes” of autism.
See the full op-ed here.
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