Introducing Key Elements Regarding Access to Personal Data for Scientific Research in the Perspective of Developing Innovative Medicines

In: European Journal of Health Law
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  • 1 CRIDS (Research Centre on Information, Law & Society), Faculty of Law, University of Namur, Bar of Brussels, Namur, Belgium
  • 2 Lawyer, responsible for International Relations, Espace Éthique Méditerranéen/PACA-Corse, Assistance Publique Hôpitaux de Marseille/Aix-Marseille Université, Marseille, France

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Abstract

This article aims at opening discussions and promoting future research about key elements that should be taken into account when considering new ways to organise access to personal data for scientific research in the perspective of developing innovative medicines. It provides an overview of these key elements: the different ways of accessing data, the theory of the essential facilities, the Regulation on the Free Flow of Non-personal Data, the Directive on Open Data and the re-use of public sector information, and the General Data Protection Regulation (GDPR) rules on accessing personal data for scientific research. In the perspective of fostering research, promoting innovative medicines, and having all the raw data centralised in big databases localised in Europe, we suggest to further investigate the possibility to find acceptable and balanced solutions with complete respect of fundamental rights, as well as for private life and data protection.