Tuesday Top of Mind 4/22/25- Sure, nothing bad has ever happened from collecting data on what is deemed as “other”

Every damned day I hesitate to open the news. It is not unlike the meme where a serious faced Captain Picard, seated behind a desk, requests “Damage Report”.

Every damned day it is something different. I understand that this is the strategy of dragging us down with overwhelming bullshit every day. After all the numbing of the population (us), is the expected result.

I know, I know, I’ve written about this before. And this is nothing that you are not aware of. Just making sure that I write it down makes me feel a little more ready to deal with the BS. This also ensures that nothing falls through the cracks because people aren’t paying attention to this nonsense because something else is on fire over there.

To explain the headline, the Health and Human Services Department secretary (like Voldemort he will not be named) wants to start a database of the Americans with autism. To curate this list, he will be using public and private insurers data bases, plus the VA and Indian Affairs, pharmacies, genomics data (DNA anyone?), and maybe even the wearable sports devices (Fitbit/Apple Watch). All this data to find the underlying cause of autism. Um, sir, that is not how you create a study.

Add in the fact that he thinks the analysis is going to take less than 5 months.

This gives me the ick.

Not only are they using databases of our private information, but there is no consent. Not only are there no consent procedures, there are no CITI procedures. CITI is the protection of human subjects in research. This is problematic. How did they get this past IRB?

As a nascent real world researcher, I can identify many, many, many problems with their proposal. And I’ve only been at this for less than 3 years.

According to the CBS News report and the Guardian article, 10-20 NIH researchers (unnamed) will be able to piece together everyone’s health records.

There are so many problems with this approach.

1. It sees all people with autism as the same.
2. This is a massive database of all American’s private medical records.
3. As described this is too broad of a research question.
4. There will be possibilities of using the data in a bad way, not described in the original research question. It is like throwing out a big net and seeing what you catch.
5. There are no inclusion and exclusion criteria listed.
6. We all know that they want the answer to be. This is no way to do research.

Why every American should be concerned.

1. We’ve been here before. In 1942, Japanese Americans were put into internment camps.
2. It starts with flawed logic that there has to be an external trigger for autism.
3. They are looking to blame vaccination, which would put us all at risk.

I knew that the current secretary was going to be bad for America’s health. At least, as long as he is tilting at this windmill.

After all, proper research is not done by shaking a Magic 8 ball because you didn’t like the first fifty answers obtained using real research.