Monday 23 May 2022
La Cave

Panel Description

The EU data protection legal framework was built around the data subject. Normally, we assume that this is a single person. This is not always the case when we consider health data in general and genetic data in particular. As we all know, there are thousands of diseases that have a genetic component. This component is sometimes inheritable. This means that if we gain access to someone’s genetic information, we can also know, or at least suspect, what the genetic endowment of his or her relatives may be. This information is therefore very relevant for all those involved. However, the GDPR is mainly built on the perspective of the individual. This perspective does not work so well with the type of issues that genetic information raise. This panel is comprised to analyse such issues from a multidisciplinary point of view:

• Could we consider that genetic data are personal data of different data subjects (not only the one who provided the biological sample)?
• Should other people’s rights prevail against the sample donor’s will not to share the data in some concrete circumstances?
• Are physicians allowed to break confidentiality if circumstances recommend it?
• Does the fact that the sample donor is dead make any difference on this framework?


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