Life, ethics, and sickle cell anemia: A single gene disorder in a contingent world (Senegal)

This dissertation draws from the social sciences, the humanities, and the field of medicine to chronicle how social life bears on forms of genetic knowledge. Relying on methods of ethnographic fieldwork, this research builds upon scholarship that takes seriously the ways genetic traits for complex, inherited disorders---in this case sickle cell anemia---are understood through human constructs contingent upon historical moment, place, and cultural reasoning, while it also examines how discourses available to peoples at specific spatial-temporal junctures mark the course of these constructs themselves. Anthropologists of the body and medicine have long emphasized the myriad effects that moral landscapes, political regimes, market economies, geo-political situations, cultural idioms, and varied notions of the self have on disease experience and treatment rationales the world over. This dissertation draws upon these theoretical descriptions of disease as socially inflected (and sometimes inflicted), while simultaneously querying the emergence, circulation, and effects of concepts from molecular genetics and the life sciences as part and parcel of social practice.; In its detail, this doctoral thesis examines elements of globally-circulated medical facts and scientific understandings of sickle cell anemia that both medical professionals and patients living with the disease in urban Senegal actively modify and broaden. Local practices of ingesting pharmacopoeia (culturally approved by researchers in Dakar) permit both a rethinking of imported medical facts weighted by interventionist protocols and genetic explanations of why Senegalese patients "fare better." While French genetic researchers gloss differential disease severity as most likely linked to population gene differences, life with the disease in Senegal pushes local practitioners to rigorously question the genetic appellation of the "Senegalese haplotype" for sickle cell disease as that entity responsible for the so-called "mild form" of sickle cell anemia observed there. Practitioners in Dakar ethically engage the role patients' lived environment, social exigencies and moral dispositions play in mitigating disease symptoms---factors which in turn affect these specialists' own scientific configurations. Patients, for their part, actively refit biomedical information to modes of life seen as "cultural" but that clearly include biological compositions that are simultaneously physiologically and socially informed.