The genetic privacy in the EU General Data Protection Regulation

The necessity to develop collections of big health data concerning an increasing number of persons, which allows studying groups with similar genetic structure in a homogenous manner is enhanced by the advancement of the new 4P medicine (personalized, predictive, preventive and, participative). The EU General Data Protection introduces specific rules applying to the special categories of personal data such as health data taking place in the context of scientific research, this including genetic research areas. The new EU data protection regulation safeguards the development of research, but also require balancing this interest with the protection of fundamental rights. Genetic data may be used to block access to employment or health insurance. It is therefore necessary to preserve the right to control the use and the potential disclosure of data (i.e. informational privacy), it is necessary to reform the existing models of informed consent. The analysis of famous disputes concerning genetic data protection could be an useful tool for studying new approach in data protection. The most important problem is to find good rules and practice on the relationship between the holder of data and biological group, especially the right to know or the right not to know genetic data.