The availability and circulation of data, information, knowledge and materials are essential in all fields of research, but they are particularly important in a period in which it is necessary to tackle a global phenomenon like the COVID- 19 pandemic. Awareness of the importance of the circulation of information derived from data, the European Commission has been elaborating a strategy for the circula- tion and sharing of personal and non-personal data. The European strategy needs the data to circulate and be shared in the economic, academic, and social environments. To achieve those objectives, EU documents use the metaphor of building a 'European Data Area', that is to say, legal, economic, and cultural frameworks governed at the continental and national levels, such as European Research Area ('ERA', see Article 179 TFEU) and the proposed European Health Data Space ('EHDS'). An analysis of the current legislation seems to indicate several legal constraints on the circulation of data (information, knowledge and material), able to affect the building of an effective European Data Area. These limitations aim at protecting individual rights, such as privacy or other interests. However, such limitations to the circulation of data may affect other relevant rights and interests such as freedom of research and health. For this reason, this paper intends to show what are the legal means to find the points of equilibrium between the different viewpoints and allow the sustainable function of the European Data Area. Because proper global governance of health data and materials is required, the paper tries to the analysis of the main EU instruments which at this moment are able to regulate it, in order to implement an effective system for the exchange of data, in the meantime that the scientific community is waiting for the European Data Protection Board (EDPB) guidance on the processing health data for research purposes, still pending
Circulation of personal data and non-personal data within the European Research Area for research and health purposes
Valentina Colcelli;Roberto Cippitani
2023
Abstract
The availability and circulation of data, information, knowledge and materials are essential in all fields of research, but they are particularly important in a period in which it is necessary to tackle a global phenomenon like the COVID- 19 pandemic. Awareness of the importance of the circulation of information derived from data, the European Commission has been elaborating a strategy for the circula- tion and sharing of personal and non-personal data. The European strategy needs the data to circulate and be shared in the economic, academic, and social environments. To achieve those objectives, EU documents use the metaphor of building a 'European Data Area', that is to say, legal, economic, and cultural frameworks governed at the continental and national levels, such as European Research Area ('ERA', see Article 179 TFEU) and the proposed European Health Data Space ('EHDS'). An analysis of the current legislation seems to indicate several legal constraints on the circulation of data (information, knowledge and material), able to affect the building of an effective European Data Area. These limitations aim at protecting individual rights, such as privacy or other interests. However, such limitations to the circulation of data may affect other relevant rights and interests such as freedom of research and health. For this reason, this paper intends to show what are the legal means to find the points of equilibrium between the different viewpoints and allow the sustainable function of the European Data Area. Because proper global governance of health data and materials is required, the paper tries to the analysis of the main EU instruments which at this moment are able to regulate it, in order to implement an effective system for the exchange of data, in the meantime that the scientific community is waiting for the European Data Protection Board (EDPB) guidance on the processing health data for research purposes, still pendingI documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
