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

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

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

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

Synopsis

In the 1980s, a research team led by Parisian scientists identified several unique DNA sequences, or haplotypes, linked to sickle cell anemia in African populations. After casual observations of how patients managed this painful blood disorder, the researchers in question postulated that the Senegalese type was less severe. The Enculturated Gene traces how this genetic discourse has blotted from view the roles that Senegalese patients and doctors have played in making sickle cell "mild" in a social setting where public health priorities and economic austerity programs have forced people to improvise informal strategies of care.


Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success.



The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today.

Excerpt

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.

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