In my last musing in this space, all three of you who read my scrawlings will recall that I spun some thoughts on Bobby Kennedy, Jr.’s outlandish statements on autistic people. That column went to press before further news about Kennedy’s war on autism escalated to further frightening heights.
As reported, Kennedy called for a national registry of Americans who have autism as part of the research process for finding a cause it, meaning that private medical data for millions of American citizens will be collected by the government.
In one story I read on the topic, Jay Bhattacharya, who is the director of the National Institutes of Health, said that the collected data will be given to researchers working on Kennedy’s autism studies, and that the data will not need the consent of the person from whom it is being used.
When I first read of this, my first thought was, “Have these clowns ever heard of HIPAA?”
In 1996, the Health Insurance Portability and Accountability Act (HIPAA) established federal standards to protect sensitive health information from disclosure without patient's consent. The HIPAA Security Rule, according to the CDC, protects specific information deemed personal health information.
Another thought entered my mind at the same time I was thinking of that burdensome issue of private information, and that was, “Where in tarnation is all the money coming from to do this?” After all, Co-President Elon Musk and his band of DOGE edgelords cut some $40 billion from the HHS budget.
By September, Kennedy said, the country will know what is causing “the autism epidemic.” Kennedy, to me, is like so many internet “experts.” He has publicly spent the past several years railing against autism, but has he ever actually spent time with an autistic person?
According to comments made by Bhattacharya in a CBS News story on the topic, the NIH will use “state of the art protections” to keep the collected data confidential, which will be collected through medication records from pharmacies, private insurance claims, lab test results and other sources such as smartwatches and fitness trackers.
The process, as well as the concept of data harvesting toward the endgame of finding a “cure” for a genetic condition should alarm anyone who values privacy and/or recalls history.
Under the Third Reich, the Nazis used registries for a variety of purposes, which ultimately was designed to identify and persecute Jewish people and to control the German population. They used a variety of methods to create registries to track and categorize individuals.
Many whom the Nazis tracked through their registries and deemed undesirable included people with disabilities. It is not alarmist nor conspiratorial in drawing that parallel from what RFK wants to do and that dark chapter of our world’s history. Registries have historically been used for discriminatory purposes, and not to glean any kind of understanding or support, which is exactly what the government should be facilitating when it comes to individuals on the spectrum – nothing but understanding and support from society, as a whole.
Reportedly, some health providers have reported an uptick in requests from individuals to have personal information removed from patient charts over the concerns of this egregious breach of privacy that RFK is pushing.
Much of Kennedy’s rhetoric attempts to link the debunked idea that vaccines cause autism. While data is necessary for healthcare research, the statements made by Kennedy as the head of HHS are alarming and have caused many with autism to lose trust in health officials. Kennedy keeps referring to an increase in autism diagnoses, which show that 1 in 31 8-year-olds are on the spectrum, according to the CDC. The CDC links this increase to better screening and awareness.
It’s not that hard to figure out, and I cannot fathom as to how the head of HHS doesn’t comprehend. A rise in autism diagnoses doesn’t mean an increase in autism, but better diagnostic tools. Think about the different kinds of cancer that are much more easily detectable now than 50 years ago. It doesn’t mean they suddenly just appeared out of nowhere. Those are the things that happen when actual research and development are adequately funded.
Perhaps a better idea would be to create a registry for megalomaniacal narcissists. This would, no doubt, include the majority of the Trump-Musk administration as well as most who thrive within the Beltway.
