Lecturer: Danaja Fabčič Povše, Vrije University Bruxelles, Belgium
One of the goals of a data management plan is to make research data FAIR (findable, accessible, interoperable and easy to reuse); often, research is carried out with people’s personal information which entails ethical and legal considerations. The lecture will start by explaining why we need to consider legal standards when working with people’s personal information; further, it will provide an overview of binding regulations such as the GDPR, as well as funders’ own internal rules (e.g. the Commission’s Horizon 2020 ethics guidelines). We will talk about the definition of personal data, basic principles and obligations of handling personal data in research context, the difference between pseudonymization and anonymization of data, discuss the upcoming regime on (re)using medical data from initiatives like the European Health Data Space, and how to ensure data are FAIR while adhering to the law.