ESHS/HSS Annual Meeting

Learning with Patient Campaigners about an international Drug Scandal

• In Event: Listening Otherwise: Epistemic Justice and Methods of Research Participation in Histories of Reproductive Biomedicine

English Abstract

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 (Murphy 2012; Epstein 2008). 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: it fails to account for the particularly personal mix of stymied agency and high vulnerability that is characteristic of campaigners and activists on medical issues.

In this talk, we will discuss the role of oral history and a participatory mode of including patient experience in a historical reconstruction of drug disasters, as well as a potential 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. In the second part, we will reflect on the ethics of inclusion though a reassessment of the contribution of oral history and documentary film and reportage to the Primodos/Duogynon campaign, a transnational group which formed around people who self-identify as having experienced teratogenic risks of hormone pregnancy tests.

Authors

• Birgit Nemec, University of Vienna

• Jesse Olszynko-Gryn, MPIWG

• Mumtaz Hussain, Worcester University