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The Enculturated Gene: Sickle Cell Health Politics and Biological Difference in West Africa (review)

Duana Fullwiley, The Enculturated Gene: Sickle Cell Health Politics and Biological Difference in West Africa. Princeton: Princeton University Press, 2011. 368 pp. Senegal may be underdeveloped, but we live well...I guess if we had no centenarians, then we might entertain the thought that we too need an overly sanitized [medicalized], American type of life. -Mr. Seck, a resident of Thiaroye, a suburb of Dakar, 2000 (2) With this comment made by Mr. Seck whose daughter suffers from sickle cell disease, Duana Fullwiley captures one of several contradictions discussed in her book, The Enculturated Gene. Senegal may be "underdeveloped"-reflected in the frustration of those with sickle cell whose government cannot provide adequate health care for their condition-nonetheless people's experiences of the disease support a Senegalese exceptionalism, consisting of social and cultural practices that enable them to survive, if not exactly to thrive. This may sound like a rationalization of unequal global health care-they don't need high-tech measures as they are managing without them-and, to some extent, it is. Yet Mr. Seck observes that some people in Senegal do live to be centenarians, suggesting that they are not without the means for addressing health problems. Indeed, his point about "an overly sanitized [medicalized] American type of life" also suggests that simply bringing treatments and equipment used in US hospitals to treat sickle cell patients in Senegal might not be entirely appropriate or welcomed. Certainly, it would be helpful to have some equipment, such as that used for performing electrophoresis (24), which would enable physicians/ specialists to distinguish homozygous sickle cell disease (those with two alleles for sickle cell-a dominant trait; HbSS) from heterozygous sickle cell disease (those with one allele for sickle cell-a recessive trait; HbSC). Such genetic information might help women and men contemplating marriage or deciding to have children to assess the risk of giving birth to a child with sickle cell disease, associated with the dominant HbSS.1 In the absence of such tests, Senegalese women and men who develop the disease and for whom children are vitally important for their social identities, marriages, and kin relations, might object to the primary treatment for sickle cell disease in the US, which consists of a form of chemotherapy known as hydroxyurea. For them, this therapy is particularly problematic as it causes temporary, and possibly permanent, infertility (36).2 Thus, having genetic knowledge may not provide a solution to a particular health problem and, as Lock (2009) notes regarding genetic test results of family members with histories of Alzheimer's disease, people may not remember or care about this knowledge, particularly when a disease's etiology is murky and it has no known cure. In the case of Alzheimer's disease, people may add this bit of information about whether they carry the APOE4 gene to a wider set of beliefs about the disease-that its emergence depends on diet, exercise, mental "exercise," and sociality as well as hereditary propensity (Lock 2009:168). In fact, the exact relationship with having a specific genetic marker, in this case, the APOE4 gene, and developing the neurological symptoms and range of behaviors associated with Alzheimer's Disease, is unclear.3 Nonetheless, this lack of exact correspondence does not mean that individuals will not opt for genetic testing as it becomes more widely available and, in some cases (such as breast cancer), act upon this knowledge (Lock 1998). What interests Fullwiley about the possibilities of genetic testing for sickle cell is the range of cultural interpretations that genetic knowledge about this condition has produced-which have varied widely depending on time and place as well as on political and social hierarchies based on race, class, and national identities. She uses the phrase, "the enculturated gene," to refer to the ways that Senegalese women and men diagnosed with sickle cell trait or disease, along with Senegalese specialists, have interpreted genetic information about sickle cell. …