ABSTRACT

This work addresses the disparity in the balance of legal power between researchers and research participants in current approaches to biobanking, and the associated problems this creates for the regulation of their interaction. It examines enduring regulatory ambiguities in UK policies and highlights that while these policies remain linked to altruism, recent practices in the evolution of biobank governance indicate a strong interest for collaborative models that redistribute some of that power to research participants. This chapter suggests that there is an urgent need to clarify fundamental principles and assumptions in regulating biobanking research relationships, which cannot be achieved without reviewing the shortcomings of the donation model.