Learning with Patient Campaigners About a German Drug Scandal*.

Area of Science:

• Medical history
• Pharmaceutical safety
• Public health

Background:

• The West German drug Duogynon was marketed as a hormone pregnancy test (HPT) globally from the 1950s to 1980s.
• In the late 1960s, Duogynon raised concerns regarding miscarriage, spina bifida, and birth defects, yet medical consensus on its teratogenicity remained elusive.
• The drug's informal use as an abortion pill contributed to societal silence and shame surrounding affected individuals.

Purpose of the Study:

• To investigate the historical trajectory of hormone pregnancy tests (HPTs) globally.
• To examine the Duogynon affair, focusing on the lack of medical consensus regarding its teratogenicity.
• To reflect on the value of oral history and inclusive research ethics in understanding drug scandals.

Main Methods:

• Utilizing oral history to gather lived experiences of individuals affected by Duogynon.
• Engaging in participatory research methods, collaborating with patient campaigners.
• Analyzing historical records and archival data related to HPTs and drug safety.

Main Results:

• The study highlights the challenges in establishing medical consensus on drug-induced birth defects, contrasting Duogynon with thalidomide.
• Patient campaigners continue to advocate for recognition of Duogynon's adverse effects.
• The informal use of Duogynon as an abortifacient complicated its historical narrative and public perception.

Conclusions:

• Collaborative, participatory research with patient groups offers valuable insights into drug scandals beyond traditional archival methods.
• Understanding the Duogynon affair through oral histories can enhance historical comprehension of pharmaceutical risks and patient advocacy.
• This approach can contribute to a more inclusive and nuanced understanding of historical drug-related controversies.