When "Big Data" Is "Big Evil"

Some frontiers were never meant to be crossed. Secretary Kennedy's attempt to aggregate so much data

We start with some mood music.

Am I in a fairly foul mood? Yes, I am.

I’m ending up reacting to the story reported by NBC and CBS about Secretary Kennedy creating a registry. Unfortunately, he’s not creating a registry like any other seen in the health field. A normal registry would be something like the patient-powered registry for PTEN that led to great things like the international care guidelines that were published.

What Secretary Kennedy is creating at the United States Department of Health and Human Services is essentially a targeting database. How egregiously bad is this? It was bad enough that my therapist felt she had to make disclosures Wednesday as to what documentation she had, what documentation HHS come pursue, and her assessment of my risk based upon the actions HHS is taking.

By the way, I’m not diagnosed autistic. I’m still likely to be caught in the blast radius of this effort, though. It is very likely that you, dear reader, are going to be caught in the blast radius of this effort too. Since much of autism revolves around genetics, very few Americans are going to be free from scrutiny considering how Secretary Kennedy is metaphorically gobbling up an extremely wide range of public sector and private sector records for this effort to try to satiate his conspiracist fantasy.

Congress in the 1970s made some very important choices as to the aggregation of disparate records. One of the big choices was that disparate records generally shouldn’t be aggregated. Government should not have total insight as to people. You should not have situations where life turns into the plot of a bad movie where David Knopfler wrote your theme song.

That’s the lurking danger that we face right now. Sure, Elon Musk is starting to fade into the background. The really nasty danger is Secretary Kennedy and Administrator Oz. With this aggregation of records and the level of control that those two have over the country’s health care system, more than a few people may find themselves either under totally unwarranted scrutiny or potentially deprived of further medical care thanks to bogus insights gleaned from this aggregation effort.

It isn’t as if you could seal your medical records. There’s no way to do that. All the laws in the world do not matter if these private companies voluntarily hand over data to HHS. Consider how much of the electronic health records market is dominated by Epic alone. Secretary Kennedy really want have to do much jawboning to get an awesomely large number of records.

Normally I would suggest contacting your legislators. For the most part they seem to be asleep at the wheel, metaphorically speaking. If you contact them, temper your expectations of any results. Consider helping those considered “disabled” as well as those dealing with “rare disease” situations in terms of finding ways to flee for safer countries. That seems more productive nowadays.

I’ll let Boston Typewriter Orchestra play us out. Until next time, stay strong. We’re all going to need strength, I think.