EHDS: extractive politics and popular deceit

It is on page 1 of the EHDS: "The EHDS will create a common space where natural persons can easily 'control' over their electronic health data."

Extractive politics

That control is wonderful. But when a new law gives you 'control' is going to give about how you spend your salary, how often you take a shower, which jumper matches your skirt, or who you love, then something else is going on.

After all, you already have that say. If the legislature then wants to give you control, it will have to be taken away first. That is exactly what is happening in the EHDS.

Current legislation gives you everything you need. What you discuss with the doctor is secret and so you decide (subject to exceptions) with whom you want to share those secrets. In addition, you have (doubly) the right to a copy: in accordance with the Civil Code (Wgbo) and in accordance with the AVG.

That the ministry has been making a mess of actually making that happen for years is another matter. The right you have.

People's Deception

So you have a right to (self)decision. Soon you will have the decision about your medical records. It sounds the same, but is something completely different.

The right of disposal means that you decide whether (and under what conditions) your data becomes available for research, public policy, Big Tech and Big Pharma.

Soon you will have the 'control' about your set of medical records. The 'control' on who else has access to your medical records has been taken away. The question is whether any of that comes back.

With much effort and pressure from the House of Representatives, an 'opt-out' (right to object) did come about, but even that is in danger of being eroded. The ministry is considering everyone always to include in the EHDS and only go to see if 'objections' have been raised at the time of exchange.

Ivory Tower

This is the "Who decides who decides?" from Shoshana Zuboff. We are put into hypnosis with the idea that we are 'control' get (here and here and here and here and here and here), but someone else determines what those 'control' really means.

Almost without exception, these are parties with interests other than those of citizens and patients. These have only one goal: as much data as possible, at the lowest possible cost. Somewhere in an ivory tower, in the middle of the Realm of the EHDS, one of them will soon push the button that will release our data.

We citizens can also do without an EHDS. With our own Personal Health Environment (PBM) and a printout for emergencies, we can go on holiday just fine.