The Privacy of Minors within Patient-Centered eHealth Systems

Abstract

E-health has become a central feature in the agenda of many European legislators. Health information technologies open up new legal issues in the transition from a paper-based framework to a digital one. The paper focus on a specific issue emerging in this transition, the treatment of the so-called «supersensitive data» of minors processed within the legal framework of the «Fascicolo Sanitario Elettronico» (FSE), a patient-centred ehealth system that has been recently defined and regulated in Italian law. After having outlined the general discipline of this system, the paper shows how the right to control their information (in some cases even against the parents’ right to access these information) recognized to minors by a growing body of sources of law and case law interpretations is challenged in this new scenario and need to be taken in account when designing the rules and the information flows permitted by FSE systems. In conclusion, some recommendations to ensure the proper design and implementation of a FSE system according to the minors’ right to control their information are provided.