From privacy to data protection in the EU: Implications for big data health research

Menno Mostert*, Annelien L. Bredenoord, Bart Van Der Slootb, Johannes J.M. Van Delden

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

Abstract

The right to privacy has usually been considered as the most prominent fundamental right to protect in data-intensive (Big Data) health research. Within the European Union (EU), however, the right to data protection is gaining relevance as a separate fundamental right that should in particular be protected by data protection law. This paper discusses three differences between these two fundamental rights, which are relevant to data-intensive health research. Firstly, the rights based on the right to data protection are of a less context-sensitive nature and easier to enforce. Secondly, the positive obligation to protect personal data requires a more proactive approach by the EU and its Member States. Finally, it guarantees a more comprehensive system of personal data protection. In conclusion, we argue that a comprehensive system of data protection, including research-specific safeguards, is essential to compensate for the loss of individual control in data-intensive health research.

Original languageEnglish
Pages (from-to)43-55
Number of pages13
JournalEuropean journal of health law
Volume25
Issue number1
DOIs
Publication statusPublished - 2018

Keywords

  • Big Data
  • Data protection
  • European Union (EU)
  • Fundamental rights
  • Health research
  • Privacy

Fingerprint

Dive into the research topics of 'From privacy to data protection in the EU: Implications for big data health research'. Together they form a unique fingerprint.

Cite this