RFK Jr. Wanted a List

The Secretary of Health and Human Services thinks the "answer" to neurodivergence starts with an involuntary national registry for those diagnosed with autism. Americans beat him back.

Robert F. Kennedy Jr. has no medical or health-related education, has never held elected office, and has spent years fomenting anti-scientific (read, "quack") medical theories against vaccine safety, regulations of the food supply, and fluoride in tap water. He believes that COVID-19 was deliberately manufactured to harm people of certain races and ethnicities while sparing others. He has spoken publicly about his past heroin addiction, and about his strange proclivities toward harvesting dead animals for their heads or meat. The man even had a parasitic worm take up residence inside his skull and die in his brain.

There should be no surprise, then, that Donald Trump saw him as the perfect selection to be our Secretary of Health and Human Services. When your own record is as bizarre and degraded as Trump's is, you want someone like RFK Jr. around to make you feel like a very stable genius.

RFK wants private health information at his disposal, whether those with autism spectrum conditions consent or not.

Now RFK Jr. has trained his worm-blurry vision on a favorite target: neurodivergence, or more specifically autism spectrum conditions. Recently, he proposed assembling a national registry using a wide range of private data sources of individuals who have been diagnosed with these conditions. He claimed that by assembling this registry and using advanced analytic techniques, his crack(pot) team of analysts can solve the mystery of what causes autism and make discoveries that will lead to cures.

Even if RFK Jr. were not a well-known "vaccine truther" who has claimed that the measles-mumps-rubella (MMR) vaccine gives people autism, I would maintain that creating an involuntary database containing untold reams of strictly protected health information of this particular type is a terrible and dangerous idea. Apparently, the American people agreed - because as of this writing, the idea has been shelved.

I am certainly appreciative of the scientific potential that sits within large datasets. Indeed, it's in my view a travesty that many databases containing years of critical data on climate change, women's health, and educational outcomes for diverse populations have been yanked from access by researchers or shut down altogether. However, a database on autism, assembled without the full consent of every individual and family impacted by these conditions, should never have been proposed. The shutdown of this idea through public protest is an object lesson in the power of mobilization to change policy.

The example of HIV/AIDS is relevant to today's debate.

To illustrate why, let's consider the example of HIV in the 1980s and 90s. During the height of the AIDS epidemic, this disease was mysterious in its origin, caused extreme suffering, and was universally fatal. Symptomology and disease progression were well-known and diagnosis became easier as physicians became familiar with it. Rates of diagnosis shot up, not only because the disease was in fact spreading, but also because recognition of the syndrome caught up with its real incidence in the population.

At that time, an AIDS registry was proposed and considered using exactly the same rationale that RFK Jr. offers regarding autism. However, thoughtful policymakers and families of the impacted stood their ground against it, citing the extreme stigma the diagnosis had already thrust them into facing. They begged for the right to privacy, and they won - the proposed AIDS registry was never created. Science proceeded (despite that same stigma hampering progress by years, by the way) and we now consider HIV infection a highly manageable disease.

Stigma against neurodivergence must be dealt with in order to make real progress on the most serious presentations of this condition.

Now let's think about autism. For some highly debilitating cases, this condition causes great suffering. While we have theories about the range of genetic and environmental causes that seem to give rise to it, we do not know its cause for certain. And, while we have psychological protocols that can make a big difference in quality of life (especially if provided early in childhood), we do not have the ability to cure all cases. However, there are also many cases of milder diagnoses, where symptomology is less severe and disabling and where accommodations in education and the workplace can provide a good quality of life to the diagnosed. For a great many people, it is stigma and its manifestations that actually bring serious harm to people, more than the disease itself.

This is why RFK Jr. and his ilk must never come anywhere close to creating their proposed registry. In a government where Signal chats are routinely used to share sensitive national security information, why should any person trust that an autism registry would be protected? In a time when echoes of 1930s authoritarianism and social "cleansing" abound, why should we not fear that stigma would soon turn to ostracism, discrimination, or worse? And when the man who wants to oversee such a registry is clearly biased towards blaming vaccines, why should we think his final public health guidance would be anything but "more measles, please"?

The American people stood up, said NO, and forced a withdrawal of this proposal. RFK Jr. has more experience with whale decapitation than real medical science. He needs to stay in his lane on this one.