Biobanques humaines, internormativité et gouvernance

Overview & Synopsis

Human biobanks, which store biological material and data, are essential tools for medical progress, research and personalized medicine. In Switzerland, their legal framework remains fragmented. This thesis examines their diversity, the issues they present and the regulatory framework that apply to them, distinguishing between binding and non-binding standards. It analyses non-binding norms – which are, in principle, not legally binding – and the ways in which they are incorporated into Swiss law. The concept of governance, defined by the principles of trust, protection of individuals, participation, transparency and accountability, is applied to biobanks through six groups of mechanisms examined in the Swiss context.