In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread. Examples include measles, COVID, flu, and polio.
A number of posts discussed Trump's support for the discredited notion.
Another leading anti-vaxxer is Robert F. Kennedy, Jr. He has repeatedly compared vaccine mandates to the Holocaust. Rolling Stone and Salon retracted an RFK article linking vaccines to autism. He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.
In light of the Trump administration's dishonesty and threats to privacy, plans for an autism registry are most disturbing. Because Trump and RFK Jr. have a long history of lying about autism, we have to assume bad faith.
Most recently, HHS announced the creation of "a real-world data platform" combining data insurance claims, electronic medical records, and consumer wearables, and enabling research into the "root causes" of autism.
It is not just autistic people who should be worried by these developments.
If you have autistic patients or an autistic person in your family, you should worry. Research can harm people not directly involved in it and should be conducted with attention to minimizing such harms. For example, autism is thought to be caused by a combination of genetic and environmental factors. Given the strong role of genes, research into the root causes of autism -- or into related conditions like attention deficit-hyperactivity disorder (ADHD), depression, or learning disabilities -- could generate important insights while also revealing sensitive or stigmatizing information about research subjects' family members and other social groups. This concern is acute, as Kennedy's hurtful comments have already perpetuated stigma. Those affected by research should have a voice in what the research looks like.
If you are among the three-quarters of U.S. adults who report having one or more chronic conditions, you should worry. Autism is the first but not the last condition that will be studied using the real-world data platform. Longer term, HHS plans to study other chronic diseases. Autistic people that it is not clear whether this research will be conducted with individuals' consent, and they have raised important concerns about data privacy.
Research into chronic conditions is needed, but for it to be ethical, questions of consent and privacy -- flagged by the autistic community but relevant to all research participants -- must be resolved. The obligation to protect participants always exists but the stakes are heightened given this administration's willingness to trample privacy norms, placing people at risk of identification and harm if their information is mishandled.
