Beyond Thalidomide: The Patient as an Agent of Change

Beyond Thalidomide will trace the historical rise of patient engagement with drug related disability through the second half of the twentieth century to understand how a novel empowered group transformed conceptions of (reproductive) health and disease in science and society.

The project will map the conditions in which patient became engaged with antenatal drug use, and reconstruct how their action has created political and scientific urgency since 1960.

This multifaceted engagement resulted in clashes of expertise that connected actors in the Global South and North, from Latin American countries through Central Africa, India, and Europe, and the enforcement and stabilization of the development of approaches in reproductive health in the light of the democratic and civil societal challenges they pose, beyond traditional accounts of expert-led, iatrogenic risk management.BT will address these aims trough analysis of four interlinked fields of patient engagement:1.Monitoring, and the surveillance of exogenous factors for birth defects2.Prevention, and the management of risks of antenatal drug use in health care systems3.Marketing, and the making of pharmaceutical products4.Legal Action, and court intervention Mapping these fields of acting, BT will create an ambitious digital collection of patient life stories and a comprehensive integrated record of how patients engage.

BT will, or the first time, deliver a global history of drug related disability from below, which examines the shifting contours of patients as actors.

This project takes a ground-breaking approach to the historiography of reproductive health, combining high-impact global case studies with innovative research tools to explore the political, ethical and social challenges of this alternative perspective.