Review of The Enculturated Gene

Anthropologist Duana Fullwiley’s 2011 monograph The Enculturated Gene serves as an ethnography of sickle-cell anemia in modern Senegal. As the first ethnographical text to treat genetic disease in Africa (xxi), this text attempts to not only draw attention to this this issue in the context of postcolonialism and scientific practices within Senegal, but also to establish that for people suffering from sickle-cell, both the acts of people “making do” with their illness and attempting to construct it as a mild condition rather than a debilitating disease, actually creates a socio-scientific reality, where science and society actively negotiate over shared space (12-13). Further, she makes the argument that genetic disease is a fruitful area of study in the global South because, unlike make other illnesses, especially infectious disease, genetic diseases are still very difficult and expensive to treat in the global North, where there are a good deal more money and resources (36).

In a brief historical overview, Fullwiley shows how scientists determined that in 1984, there existed a less severe strain of sickle-cell anemia, which was common in Senegal. The perception that there was some sort of biological exceptionalism to Senegal led residents to a series of social and cultural practices that allowed them to cope with the disease on far better terms than doctors initially anticipated. In fact, Fullwiley suggests that many of the ways that American doctors would treat sickle-cell, by treating it as a far more serious condition, would possibly be unacceptable in Senegal. For example, since this disease is difficult at best to treat in the West as well, and its therapies include side effects such as cancer, hair loss, severe pain, and even infertility (36-37), besides costing a great deal more than the Senegalese health system can support. In Senegal, the standard treatment for sickle cell anemia involves a regime of folic acid and Tylenol, for those who can afford it, though many live normal healthy lives even without treatment. However, local people also optimistically use traditional drugs as well and the fagara plant (91) has been used quite effectively to increase the fetal hemoglobin in the bloodstreams of the afflicted. Her text suggests that the study of sickle-cell anemia must be complicated and cannot divorce relationships between science, family times, health policy, gene, or even plants in order to fully understand genetic diseases.

Though my knowledge of ethnography is limited, Fullwiley’s texts fits within the historiography of medicine, as well as work in science studies. Historian of medicine Keith Wailoo, who she cites extensively, has also written about the ways that ideas of race and politics intersect in genetic diseases in the United States. However, Wailoo’s texts are clearly histories, and do not use the type of embedded research and other ethnographical tools on which Fullwiley prides herself. Additionally, she is making a claim that understanding history, particularly the colonial history and subsequent health systems of Senegal are vital to understanding the way that science its practiced today, a claim which places her work into the larger field of Science Studies.