Big Data in health research: Safeguarding rights and interests

Abstract

Big Data is transforming health research into a data-intensive endeavour. This has sparked a lively discussion about how such data use should be governed by principles and rules. Moreover, the need for enhanced protection of personal data has led to a profound legislative reform of data protection law in the European Union (EU), which resulted in the adoption of the Generel Data Protection Regulation (GDPR). The challenge is to allow for progress in data-intensive health research while safeguarding relevant rights and interests. This thesis adresses the question of how relevant rights and interests can be safeguarded and balanced in the EU, without disproportionately hampering data-intensive health research.