Beyond Thalidomide: The Patient as an Agent of Change

Introduction

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.

Patient Engagement Mapping

The project will map the conditions in which patients became engaged with antenatal drug use and reconstruct how their actions have 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.

Challenges in Reproductive Health

The enforcement and stabilization of the development of approaches in reproductive health will be examined in light of the democratic and civil societal challenges they pose, beyond traditional accounts of expert-led, iatrogenic risk management.

Fields of Patient Engagement

BT will address these aims through analysis of four interlinked fields of patient engagement:

1. Monitoring, and the surveillance of exogenous factors for birth defects
2. Prevention, and the management of risks of antenatal drug use in health care systems
3. Marketing, and the making of pharmaceutical products
4. Legal Action, and court intervention

Digital Collection and Global History

Mapping these fields of action, BT will create an ambitious digital collection of patient life stories and a comprehensive integrated record of how patients engage.

Ground-breaking Approach

BT will, for 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.