Embracing complexity and uncertainty: An analysis of three orders of ELSA research on biobanks

Abstract

During the past decades, research on ethical, legal, and social aspects (ELSA) of biobanks suggested and analysed various ethically and socially justifiable frameworks for collecting, storing, and distributing human biological material and bioinformation. In this article, we identify three patterns of argument that differ in terms of shared core assumptions and similar conceptual as well as normative orientations. These discursive 'orders', which are related to specific macropolitical contexts, have significantly shaped contexts for biobank policymaking. The first order was characterised by high expectations of genomics and biobanking. Second order discourse partly took over the problems located in the first order, but reintroduced them into a justificatory framework that identified biobanks as public goods per se. The third order of ELSA expertise maintained a supportive attitude towards biobanking. However, regulation based on deductive reasoning became progressively complemented by ideals of participatory mechanisms and different methodologies of studying public perceptions. We conclude that this emphasis on learning processes and deliberation helps biobank communities to develop new concepts, methods and insights that will prove helpful in order to adapt to essentially undetermined futures of transnational innovation societies.