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ix P R E F A C E What do postcolonialism, North-South economic disparities, and African peoples’ struggles to obtain health have to do with the writing of genetic science ? Can patients who live the irregularities and unevenness of priorities that define “global health” actually shape their biological destinies for the better when afflicted with a gene anomaly? This book is a medical anthropologist ’s attempt to document how people enact what it means to have sickle cell anemia, a familiar enough condition, in a place less well known, Dakar, Senegal . In it I argue that patients with sickle cell express the symptoms of this blood disease through their bodies and biology, yet they do so by articulating pain, health, and normalcy in light of idioms of kinship, colonial histories of race, postcolonial population genetics, material medical lack, and failed health infrastructures that mark nearly every aspect of their lives. Ultimately I claim that sickle cell, like any disorder, has no singular disease ontology that could possibly be stripped from the historical and political structures in which people affected live. Social actors—patients and families, as well as scientists, doctors, and healers—have brought about specific experiences of this disorder in their everyday struggles with the economics of health care, in their efforts to reorder their global standing, in their hopes to establish scientific authority, and in the survival tactics they forge through therapeutic social supports with others. Together they conjure sickle cell well-being in the face of systematic health triaging in the global South. Like the human genome itself, the human social history of sickle cell in Senegal, West Africa has many common identifiable bases elsewhere, which can be compared to similar legacies and cultural understandings of the disease beyond Dakar’s shores. It also has many points of difference. In what follows I focus on how people embody sickle cell variation and differential lived expressions of sickling blood through historical, personal, scientific, and political processes that yield forms of life where biology and cultural strategies for living well are perpetually interlocked. Preface x The Early Social Biography of Sickle Hemoglobin In 1945 the renowned American chemist Linus Pauling, who would later receive a Nobel Prize for his research on the chemical bond, learned of sickle cell for the first time from a colleague. He later recounted that upon hearing that patients’ red blood cells sickled in the venous circulatory system (when deoxygenated), he almost immediately imagined that a hemoglobin abnormality was at issue (Pauling 1970, 1011). For the next short period Pauling set several younger scientists training under him at Caltech to work on the idea that sickle hemoglobin might have a different chemical bond type that could account for the shape of the deformed (deoxygenated) cells in patients with the disease, which did not pan out (Gormley 2007, 73). Eventually, they decided on a line of research that could simply measure the electrical charges of different proteins in order to determine that they were indeed seeing a different hemoglobin molecule in people with the disease. Their observation that “sickle hemoglobin . . . has 2–4 more net positive charges than normal hemoglobin” was detailed in the now classic paper, “Sickle Cell Anemia: A Molecular Disease” (Pauling et al. 1949, 546). Even though they had yet to determine exactly how this variant hemoglobin protein caused sickling, their study made sickle cell the first molecular elucidation of a genetic condition recorded in the annals of science. Yet both before and after the disease’s technical role in birthing molecular medicine, sickle cell anemia was much more than a simple gene disorder. One might go so far as to call it a cultural icon in the social history of medicine . From the time of Pauling, the blip in the gene sequence that resulted in an altered form of hemoglobin taught researchers how single Mendelian alleles resulted in disease (one from each parent would find its way into the offspring) as well as the genetic basis for this protein change that could result in disorder (viscous sickle blood jammed veins creating painful blockages). Yet, sickle cell science could never be neutral or devoid of judgments about human similarity and difference. Years before Pauling’s “molecular disease” appeared in Science Magazine, in 1910 a Chicago doctor named James Herrick was the first to discover the illness and its characteristic “sickled blood cells” in a black patient of Caribbean origin. Subsequently, the crescent-shaped cells routinely revealed themselves in the blood of black...

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