Human tissues in the "public space": Beyond the property/privacy dichotomy

Abstract

During the past 20 years, human biological materials (HBMs) have become increasingly important for research as well as for therapeutic uses and related commercial exploitation. The scientific and regulatory conditions for their procurement, testing, processing, preservation, storage, and distribution have been reflected upon widely and developed in both the civil law and the common law domains. In the normative puzzle taking place around the biobanking of HBMs and information, the basic legal perspectives underlying most normative analyses remain anchored to the concepts of autonomy-also conceived of as privacy-and property. The former has been primarily developed in Europe, the latter in the US. Both are showing some failures, while the normative picture as a whole appears inadequate. This contribution explores the main existing legal frameworks for biological materials, both in the US and EU contexts, and the potential for reconciling individual and collective dimensions in biobanking through a participatory approach. The legal fate of bodily materials is somewhat similar to that of the environment. In both instances, the notions of subject of rights (the rights holder) and of object of property (the object held) have failed to fully represent the potential for collective sharing. And in both cases, the procedural participatory turn has allowed a more adequate legal imagination to address different needs and goals.