Beyond Thalidomide pioneers a history of the global rise of patient engagement with drug-related disability in the second half of the twentieth century to understand how newly empowered agents transformed conceptions of (reproductive) health and disease in science and society.
Since the Thalidomide crisis, we may think we know how patients concerned with drug-related disability and their primary caregivers act. We don’t. This is because, until recently, we ignored a crucial way in which health practices are negotiated: through patient-led civic engagement in local and transnational networks.
Beyond Thalidomide develops a framework to examine the origins, development, and consequences of patient engagement with antenatal drug use, iatrogenic disability, and reproductive health from the 1960s up to the present.
Today, patients are no longer merely the object of medical endeavors. Patient engagement has arguably become a crucial component of medical knowledge production and health governance, rooted in previously existing forms of critical social engagement and competing with established gold standards of knowing, such as scientific causation (Söderfeldt 2020; Zaretsky 2018; Briggs 2017; Murphy 2018; Epstein 2008).
Beyond Thalidomide is a historical research project in partnership with patient and stakeholder groups.
CREDITS
The growing empowerment of this group of actors into powerful stakeholders is evident. Yet simply expanding the concept of the patient to cover their role as users and consumers in the liberal market economy also falls short. Even as activists, patients and their caregivers remain highly vulnerable, in mental health and environmental toxins research, and especially in evaluations of the side-effects of pharmaceuticals, which spurred activist engagement across the “global South” from Latin America through Central Africa, since the 1960s.
But patients—especially in the broader sense as active agents— are largely absent from scholarly attention. From Thalidomide to synthetic sex hormones, acne medication, and anticonvulsants, traditional drug and reproductive health histories have focused on experts and regulatory authorities (Gaudillière/Hess 2013; Daemmrich 2004; Abraham/Davis 2013). We therefore propose an expanded concept of the patient, which forms the basis for the Beyond Thalidomide project.
Beyond Thalidomide’s key questions are:
1. In what ways have patients engaged with, acted upon, challenged and redefined the biomedical knowledge, medical approaches, global markets, and legal structures that form the cornerstones of reproductive health?
2. What knowledge, practices, and resources have shaped the historical rise of patient engagement with drug-related disability from the fringes to the mainstream of health discourse? How have patients become versatile and empowered agents and how can this group of actors be conceptualized more precisely?
Beyond Thalidomide addresses the project’s objectives through the analysis of four interlinked fields of patient engagement:
Traversing the scientific, medical, social, and economic spheres in which patients engage, the project combines a user-based history of pharmaceuticals with a patient-activist history of science, medicine, and reproductive health. Across these domains, the project reconstructs the historical emergence of patient engagement as a set of practices that unite patients and their primary caregivers, drug users, and health activists to articulate knowledge and experiences around the relationship between drug use, disability, and reproductive health in the pursuit of democratic alternatives.
DESCRIPTION
In mapping out patient’ fields of activity, Beyond Thalidomide will create an ambitious digital collection of patient life stories and a comprehensive integrated framework of how patients engage. The project’s aim is to deliver, for the first time, a global history of drug-related disability “from below” that examines the shifting contours of patients as agents of change. It takes a novel 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 and its implications for policy reform.
Oral History is a central methodological resource. Please do get in touch with the team if you want to contribute with your experience on drug use during pregnancy, disability, and reproductive health.
This website is part of a project that has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant agreement No. 101115642)