Bookmarked Data altruism: how the EU is screwing up a good idea (by Winfried Veil)

I find this an unconvincing critique of the data altruism concept in the new EU Data Governance Act (caveat: the final consolidated text of the new law has not been published yet).

“If the EU had truly wanted to facilitate processing of personal data for altruistic purposes, it could have lifted the requirements of the GDPR”
GDPR slackened for common good purposes? Let’s loosen citizen rights requirements? It asumes common good purposes can be well enough defined to not endanger citizen rights, turtles all the way down. The GDPR is a foundational block, one in which the author, some googling shows, is disappointed with having had some first hand experience in its writing process. The GDPR is a quality assurance instrument, meaning, like with ISO style QA systems, it doesn’t make anything impossible or unallowed per se but does require you organise it responsibly upfront. That most organisations have implemented it as a compliance checklist to be applied post hoc is the primary reason for it being perceived as “straight jacket” and for the occurring GDPR related breaches to me.
It is also worth noting that data altruism also covers data that is not covered by the GDPR. It’s not just about person identifiable data, but also about otherwise non-public or confidential organisational data.

The article suggests it makes it harder for data altruistic entities to do something that already now can be done under the GDPR by anyone, by adding even more rules.
The GDPR pertains to the grounds for data collection in the context of usage specified at the time of collection. Whereas data altruism is also aimed at non-specified and at not yet known future use of data collected here and now. As such it covers an unaddressed element in the GDPR and offers a path out of the purpose binding the GDPR stipulates. It’s not a surprise that a data altruism entity needs to comply with both the GDPR and a new set of rules, because those additional rules do not add to the GDPR responsibilities but cover other activities. The type of entities envisioned for it already exist in the Netherlands, common good oriented entities called public benefit organisations: ANBI‘s. These too do not absolve you from other legal obligations, or loosen the rules for you. On the contrary these too have additional (public) accountability requirements, similar to those described in the DGA (centrally registered, must publish year reports). The DGA creates ANBI’s for data, Data-ANBI’s. I’ve been involved in data projects that could have benefited from that possibility but never happened in the end because it couldn’t be made to work without this legal instrument.

To me the biggest blind spot in the criticism is that each of the examples cited as probably more hindered than helped by the new rules are single projects that set up their own data collection processes. That’s what I think data altruism is least useful for. You won’t be setting up a data altruism entity for your project, because by then you already know what you want the data for and start collecting that data after designing the project. It’s useful as a general purpose data holding entity, without pre-existing project designs, where later, with the data already collected, such projects as cited as example will be applicants to use the data held. A data altruistic entity will not cater to or be created for a single project but will serve data as a utility service to many projects. I envision that universities, or better yet networks of universities, will set up their own data altruistic entities, to cater to e.g. medical or social research in general. This is useful because there currently are many examples where handling the data requirements being left to the research team is the source of not just GDPR breaches but also other ethical problems with data use. It will save individual projects such as the examples mentioned a lot of time and hassle if there’s one or more fitting data altruistic entities for them to go to as a data source. This as there will then be no need for data collection, no need to obtain your own consent or other grounds for data collection for each single respondent, or create enough trust in your project. All that will be reduced to guaranteeing your responsible data use and convince an ethical board of having set up your project in a responsible way so that you get access to pre-existing data sources with pre-existing trust structures.

It seems to me sentences cited below require a lot more thorough argumentation than the article and accompanying PDF try to provide. Ever since I’ve been involved in open data I’ve seen plenty of data innovations, especially if you switch your ‘only unicorns count’ filter off. Barriers that unintentionally do exist typically stem more from a lack of a unified market for data in Europe, something the DGA (and the GDPR) is actually aimed at.

“So long as the anti-processing straitjacket of the GDPR is not loosened even a little for altruistic purposes, there will be little hope for data innovations from Europe.” “In any case, the EU’s bureaucratic ideas threaten to stifle any altruism.”

Winfried Veil