Welcome to data communism

This article was previously published on iBestuur.co.uk

Recently, the European Parliament reached a preliminary political agreement on the European Health Data Space (EHDS), introducing a completely new paradigm. Our medical and social data will end up in a European network of data centres, where not we, but the government decides who gets access and under what conditions.

Data communism

Confidentiality is being replaced by 'data solidarity'. It is our moral duty as citizens to share all our data for larger common purposes, such as medical-scientific research and innovation. The word 'common' appears 64 times in the text. Well solidarity is a wonderful principle; it is our shared values and ideas for which we are willing to put aside our own interests. It is the emotional glue that binds us together as a society. But solidarity does imply a personal choice and with the EHDS, this is imposed from above. This is not 'data solidarity', but 'data communism'.

This is exemplary of how 'Brussels' usurps power. Citizens are promised 'more control over their medical data', but in fact the opposite is happening. Citizens surrender their control and this power of disposal is divided between the European Commission, member states and a wide range of stakeholders, each with its own partial interest. Healthcare institutions will be obliged to transfer the data. At most, a member state itself can introduce a right to object (opt-out), but even that is not foolproof. In the event of a crisis, this can be brushed aside and European bodies will still have access to our data for policy purposes.

The end justifies the means

Communications from policymakers and proponents of this proposal invariably follow the same pattern. First, reference is made to the importance of the large-scale availability of data, followed by the plea that the data be processed only in a secure environment and that citizens should not be identified. The answer to the question "why?" is thus used to legitimise the "how?", while in the latter lies the fundamental problem. Citizens become dependent for monitoring the use of their data on a huge technocratic institution over which they have no control.

Growth in number of data spaces

The EHDS is the first of several 'data spaces' envisioned by the European Commission, all of which should soon be linked together. If the right to self-determination can be abolished for our medical data, then we can foresee that data on our driving habits, energy consumption, and finances will soon be similarly made available for training AI from BigTech companies and other purposes.

The crux of the problem lies in the European Commission's starting point: common spaces for a free market of data. As a result, fundamental rights are no longer a foundation, but a component on the balance sheet where they are weighed against the importance of innovation, or economic growth. Our personal data becomes a commodity, just as it is with Facebook and Google. There is no fundamental objection to this, as long as the right to self-determination is guaranteed and we can decide to block access at any time, with the guarantee that that data then no longer exists anywhere else.

If you want insight into people's private lives before doing research, you can explain neatly why you want it and what you will do with the data. The accountability you provide with this builds trust and creates a safe space for citizens to actually show solidarity.