What About Post-Mortem Digital Privacy and Personal Health Data Protection ?
Résumé
Recent efforts from national and international regulators such as the European Union (EU) concentrated on protecting privacy of the living individuals. But in the big data era where the global digitalisation of all the economic sectors allows world’s datafication and of daily professional or intimate life, we will inevitably face more questions on what constitutes or should constitute individuals’ digital privacy after the data subject passed away, the so-called “post-mortem digital privacy”. The doctrine defines post-mortem privacy as “the right of a person to preserve and control what becomes of his reputation, dignity, integrity, secrets or memory after death” . Questioning post-mortem privacy is particularly important where the data at stake are considered as sensitive personal data categories, which includes health-related personal data and genetic data according to the EU GDPR. First, this article explores existing major pieces of regulations in order to figure out if specific provisions exist which would grant special protection to personal health data after data subjects’ death. We explore International and EU legal instruments, hard- and soft-law, including ethical recommendations, pertaining to personal health data protection, to healthcare and biomedical research (Part 1). Second, we will explore some existing post-mortem digital privacy frameworks with examples of policies voluntarily set up by important actors of the digital world, or set up at a research project’s level, and with an example of national law, in France (Part 2). This exploratory work does not aim to be exhaustive but constitutes a plea to further investigate the ethical, legal and social issues and innovations in the field in the coming years.
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