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.