“Data altruism”: should you agree to share your personal data?

► “Discriminatory risks”

Gloria Gonzalez Fusterresearch professor at the Faculty of Law and Criminology of the Vrije Universiteit Brussel

“The notion of data altruism has a very positive connotation, which sometimes gives the impression that not sharing your data would be a bad thing. But this is not a trivial gesture, especially if it is sensitive data such as health data.

In addition, once their data is processed, enforcing their rights is not necessarily easy for everyone. You have to be able to afford to make a request for access to data, to complain, to telephone, to send e-mails…

There is also a contradiction in the approach of the European Commission’s project: pushing to share more of its data is to imply that those who do not do so are not contributing to the general interest. But this is not at all the case: in practice, there is already a legal basis based on the general interest which makes it possible to dispense with the consent of the person to process their data. Asking for people’s consent may result in a disparity of this data which will therefore not be representative. However, if algorithms and artificial intelligence are based on data that are not accurate and of high quality, there is a risk that they will be discriminatory. »

► “No fear for privacy”

Eric SalobirPresident of the Human Technology Foundation and member of the National Digital Council

“90% of the data produced in Europe is never used. The idea is not to do individual profiling but to use anonymized and aggregated data to feed research programs, particularly in the fields of health or mobility.

For the moment, the data is widely shared on a commercial basis and through open data, which consists of offering it to everyone, free of charge and in an undifferentiated way. But if we want to put data at the service of the general interest, we must be more selective about the profile of users and more pragmatic, by finding the means to finance the management of this data. This is what the “data altruism” model proposes.

This approach is voluntary. With the creation of “trusted third parties” (independent and non-profit organizations which will be responsible for ensuring the transparent collection of data transmitted by users for purposes of general interest, editor’s note)the text of the European Commission sets a framework that will allow citizens and businesses to exercise their generosity by sharing their data without fear for their privacy.

Because protecting data without enhancing it is only halfway there. Digital sovereignty also lies in the proper use of the means at our disposal. I hope that this text will trigger a broader approach, a way of doing politics by encouraging the good, not just by prohibiting what is harmful. »


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