Summary
Objectives: To introduce some of the privacy protection problems related to genomics based medicine
and to highlight the relevance of Trusted Third Parties (TTPs) and of Privacy Enhancing
Techniques (PETs) in the restricted context of clinical research and statistics.
Methods: Practical approaches based on two different pseudonymisation models, both for batch
and interactive data collection and exchange, are described and analysed.
Results and Conclusions: The growing need of managing both clinical and genetic data raises important legal
and ethical challenges. Protecting human rights in the realm of privacy, while optimising
research potential and other statistical activities is a challenge that can easily
be overcome with the assistance of a trust service provider offering advanced privacy
enabling/enhancing solutions. As such, the use of pseudonymisation and other innovative
Privacy Enhancing Techniques can unlock valuable data sources.
Keywords
Genomic medicine - privacy - confidentiality - stigmatization - discrimination - TTPs
- PETs - pseudonymisation