Surviving Experiments: The Afterlives of Chemotherapy Trials in Uganda

Surviving Experiments: The Afterlives of Chemotherapy Trials in Uganda

Between 1968 and 1978, researchers collected the blood, tumor tissue, and photographs of over one hundred Ugandan children suffering from a rare cancer called Burkitt’s lymphoma. These samples and images were part of a broad-sweeping collaboration between the American National Cancer Institute and the Makerere Medical School to study the effects of combination chemotherapy on lymphoma. Despite a setting with no access to radiotherapy technologies, not to mention the violence and scarcity brought by Idi Amin’s government, the long-term data from these studies showed remarkable cure rates. Nearly 50% of the patients in this study cohort went into long term remission from their cancer over a ten year period of follow up in the 1970s. Today in Uganda, with comparatively better resources and far more peaceful times, survival rates for Burkitt’s lymphoma are lower than they were in the 1970s.

This paper examines the social and practical work involved in creating Burkitt’s lymphoma survival data. First, I unpack the practices of field research, sample collection, and oncological care that shaped the production of knowledge about Burkitt’s lymphoma survival. In the second half, I discuss the afterlives of these experiments. I show how the practices vital to creating knowledge about Burkitt’s lymphoma and the survival of patients became invisible. Practices such as “making friendship” with patient families, regular visits to villages, and providing meals of chicken and meat, were not included in medical publications. The bodily evidence extracted from patients did not survive due to infrastructural disruptions to cold storage in the 1970s in Uganda, making it biologically impossible to ask if Burkitt’s lymphoma today is “the same” as it was 40 years ago. This case study shows how practices that create and shape knowledge and evidence do not always survive themselves.