title: Fines, orders, fear . . . and consent? Medical research in East Africa, C. 1950s.
abstract: This article reconstructs the history of medical research in East Africa (Kenya, Tanganyika, Uganda), laying out the lies, rumours, and oppressive techniques that made research such a fraught enterprise during the colonial era. The focus is on the beginning stages of medical research: researchers' arrivals, villagers' responses, the gathering of subjects and consent. New archival and oral sources gathered in East Africa illuminate the research encounter and reintegrate the perspective of villagers cum subjects. Data from the 1950s shows that upon arrival in a village, researchers regularly lied in order to avoid sensitive topics and sidestep potential opposition. Misinformation fuelled villagers' fears, skepticism and rumours of blood stealing researchers. When it came to gathering subjects, researchers were rarely involved in the challenging work of enticing villagers to participate, preferring to rely on chiefs. Chiefs, however, often relied on heavy-handed and ethically questionable techniques. The article concludes by looking at the much-discussed concept of group consent, and showing that historically a chief never had the authority to consent on behalf of villagers.
authors.affiliation: African Studies Center, 232 Bay State Road, Boston University. Boston, MA 02215, USA. graboyes@bu.edu
authors.forename: Melissa
authors.initials: M
authors.lastname: Graboyes
mesh_terms: D000351:Africa, Eastern; D035843:Biomedical Research / Q000941:ethics*; D008192:Deception; D032984:Ethics, Research; D005239:Fear; D006801:Humans; D007258:Informed Consent / Q000941:ethics* / Q000592:standards; D018579:Patient Selection / Q000941:ethics*; D012108:Research Personnel / Q000941:ethics*; D035844:Researcher-Subject Relations / Q000941:ethics*