Editorial: Popular concerns about medical research projects in sub‐Saharan Africa – a critical voice in debates about medical research ethics

Abstract

Popular concerns about blood-stealing, trade in body parts, surreptitious birth control and the deliberate spreading of disease are common across sub-Saharan Africa, and there are indications that they are becoming more common in pace with the process of deprivation that economic and political destructuring has, over the last quarter century, set in motion across most of the continent (Comaroff & Comaroff 2000). Such stories are commonly referred to as ‘rumours’ – by those who observe and dismiss them, but also by those who, usually with due scepticism, pass them on to others. With its connotation of hearsay and gossip, the term is often used in contrast to ‘truth’, much like the equally problematic distinction of ‘belief’ and ‘knowledge’. It is our aim in this paper to move beyond the dismissal of these stories as ‘mere’ rumour, based on erroneous belief or traditional superstition, and to appreciate them as modern commentaries on social relations that involve, and extend far beyond, scientific medical research. If we nevertheless use the words ‘rumour’, ‘story’ and ‘concern’ synonymously, we follow the historian Luise White’s understanding that rumours, such as vampire stories in 20th-century Africa, ‘are neither true nor false, in the sense that they do not have to be proven beyond their being talked about; but as they are told, they contain different empirical elements that carry different weights: stories are told with truths, commentaries, and statements of ignorance’ (White 2000). By telling these stories, relating them to empirical facts in a given locality and at a particular moment, and intertwining them with other seemingly unrelated tales, people make new connections and reveal hitherto unseen links, weaving wide, often global connections into local patterns of relatedness (Geissler 2005). When, below, we speak of ‘rumour’ we are not expressing our scepticism; rather, we are reflecting the scepticism of those who tell these stories: their ambiguity towards formations of knowledge and power that reach deep into their everyday lives, and which are set in a world order that provokes their doubts. Medical research and the ‘trial communities’ it constitutes by linking scientists and subjects, institutions and funders, media and publics, is one of the networks of global connections that has been particularly prolific in the generation of rumours (P.W. Geissler and C. Molyneux, in press). The sort of rumours mentioned above, particularly those about blood, are often directly related to medical research and health interventions. During 15 years of involvement in medical research in Africa we have repeatedly encountered such rumours. From friends and colleagues we have heard many more reports of such rumours, sometimes impeding recruitment to research, affecting adherence to interventions and even threatening the continuation of whole research projects while more commonly providing a background noise without direct impact (Geissler 2005; Molyneux et al. 2005a; Pool & Geissler 2005; Fairhead et al. 2006; for a rare note in a medical paper, see Nchito et al. 2003; for the potential detrimental impact of public debates see most recently Singh & Mills 2005). Most of these rumours follow a relatively limited number of themes, while also showing regional and locally specific variation. On a more general level they merge into related genres such as urban legends and oral traditions (Burke 1998; Ellis & Ter Haar 2001), Tropical Medicine and International Health doi:10.1111/j.1365-3156.2006.01682.x