A Dangerous New Development From RFK

This is a tough one to write. I want to balance the need to sound an alarm without also sounding alarmist. When talking about politics and culture it’s easy to sink into a rhetorical abyss where everyone who disagrees with you is a Nazi. It’s a terrible habit that minimizes the unique genocidal history of Nazi Germany. But sometimes it’s all you’re left with.

I’m currently re-reading Steve Silberman’s excellent book NeuroTribes, a compassionate, comprehensive, and readable book on the history and future of autism. Part of the book examines the work of Hans Asperger, one of the first doctors to describe autism. Asperger was working in Nazi-run Austria and his legacy is mixed. He did a great deal to emphasize the full humanity of autistic people, both their challenges and gifts. But this was a time when the Nazis were implementing their eugenics programs. The regime worked with doctors to identify disabled children and then murdered these children by gas, injection, or starvation. The child euthanasia program became the blueprint for the Final Solution—the industrialized murder of the Jews of Europe.

That’s an ugly background to start a story, but history matters (and today is Yom HaShoah, Holocaust Remembrance Day). Yesterday it was announced that Robert F. Kennedy, Jr., Secretary Health and Human Services, is launching a wide-ranging data-mining operation in his effort to “study” autism. He is specifically creating a new disease registry to track autistic people.

As we’ve seen in some of my posts, in the right hands disease registries can be powerful tools to improve public health. In the right hands. In the wrong hands, they can be used to discriminate in more ways than I can easily recount. There are ethical ways to collect and use this kind of data, but we cannot rest on the presumption of good faith on the part of the government or researchers. That’s why we have laws like HIPAA that closely monitor health data privacy, and methods to monitor scientific studies that involve human subjects.

And if you want to conduct a scientific study about real people, you will (under normal circumstances) be monitored by an institutional review board whose job it is to make sure you are working ethically and safely. If you are a researcher and you want to look at large sets of data that include private health information there are lots of layers of protection. For example, data can be anonymized before it’s given to scientists. They could be given only the demographic and clinical information necessary for the study. And the government does have access to huge amounts of health information, especially if you are insured by Medicare or Medicaid. But to scour every source of health information—your pharmacy, your lab tests, your smart watch, and to give it to the sort of people whom Kennedy has hired—this is dangerous in a way that leads me back to the Nazi analogy.

In an earlier piece I told you about David Geier, the man Kennedy has pegged to lead his autism research—a man who got in trouble for practicing medicine without a license and who, along with his physician-father, chemically castrated autistic kids. Jay Bhattacharya, the new director of the NIH quoted above, is widely reviled by the medical community for his vaccine skepticism and his activism encouraging the spread of covid to achieve “herd immunity”. (I wish I was making this up.) These are not the sort of people we should be trusting with a list of all autistic people in the U.S.

So far, people working for this administration have given us no reason to trust them to stick to ethical norms. There is no reason to presume good faith on their part. And personal medical information is as private and potentially dangerous as it gets.

You should not want anyone you love to appear on an autism registry created by and used by Kennedy and his minions. It’s not that I believe that he will come, like the Nazis, to euthanize our children. But Kennedy sees autistic people as broken, as less than human. Collecting lists of people who are viewed as less-than-human never ends well.

Stay well, get angry, and make your voice heard.

-pal