Lunch Seminar: Revisiting ‘Professional Guinea Pigs’: Over-volunteering, Registries and Regulatory Cultures in Clinical Trials Research

Based on an ethnography of human volunteers making a living by participating in phase I clinical trials in Philadelphia, this talk revisits the role of registries in preventing over-volunteering (more than one trial at a time or enrollment without respecting the “wash out period”) and limiting exploitation and reducing risk exposure among professional subjects. In the context of an emerging global push for registries, we propose a comparative research agenda examining national registries in France and the UK. While both registries appear to share some technical similarities, they also exhibit important institutional differences. The UK registry is non-mandatory and industry-led, whereas the French registry is a mandatory, centralized public registry. By understanding registries not only as technical and material artifacts that prevent over-volunteering, but also as reflections of pharmaceutical interests, legal regimes, and scientific and bureaucratic cultures, we outline a comparative framework for examining how registries were constituted, how they operate, and how they affect clinical trial participants.