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The Enculturated Gene

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

Duana Fullwiley
Copyright Date: 2011
Pages: 368
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  • Book Info
    The Enculturated Gene
    Book Description:

    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 Genetraces 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 Genereveals 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.

    eISBN: 978-1-4008-4041-0
    Subjects: Anthropology, Sociology, History

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-vii)
  3. List of Illustrations
    (pp. viii-viii)
    (pp. ix-xxiv)
    (pp. xxv-xxviii)
  6. CHAPTER ONE Introduction: The Powers of Association
    (pp. 1-44)

    In the summer of 2000, as the rainy season started, I made my way to the poor Dakar suburb of Thiaroye to meet a family with multiple cases of sickle cell anemia. There were no paved sidewalks and my shoes sank in the mud when I jumped off the rusty minibus in a line of other hurried passengers. Stray sewer water bubbled from an opening in the street, creating small puddles of grey that were now being abluted by the downpour. Mr. Seck, the man I had come to see, had his niece keep watch for me, “the American from...

  7. CHAPTER TWO Healthy Sicklers with “Mild” Disease: Local Illness Affects and Population-Level Effects
    (pp. 45-76)

    As discussed in the last chapter, clinicians and geneticists in Francophone sickle cell circles have adopted an optic of seeing African sicklers in terms of population groups that exhibit differences in disease expression. However, a key slippage occurs when scientists observe biological “outcomes” and assume, as a first response, that these should be attributed to distinct genetic sequences, which those same populations possess at different frequencies. This chapter examines how such scientific methods and assumptions may miss complex congeries of behaviors and relationships that influence people’s disease experiences and biological expressions of sickle cell anemia.

    By engaging cultural frameworks of...

  8. CHAPTER THREE The Biosocial Politics of Plants and People
    (pp. 77-118)

    The Dakar neighborhood ofFas, named after Fez in Morocco, is just minutes from the city center where wide avenues and multistory buildings dominate. Arriving in Fas, however, is a quick reminder of how Dakar’s city planning, initially organized for the French colonial administration, peters out when one leaves the urban center and the adjoining area ofle plateau. Theplateauwas the central hub of French West Africa’s colonial and economic administration, and has since retained government buildings, as well as banks, international hotels, and major hospitals.Ville, as locals call it, still stands in stark contrast to many...

  9. CHAPTER FOUR Attitudes of Care
    (pp. 119-157)

    Nearly all of the biomedical professionals I encountered during my fieldwork spent extended research stays in Paris to obtain higher medical training in hematology, genetics, and pediatrics. These fields are key to sickle cell disease management. When Senegalese professionals return to Dakar, however, a certain realization sets in. The disease looks different in Senegal, they all seemed to agree, while the technologies they mastered in Paris quickly faded into skills learned for training purposes with limited local application. Quite simply, techniques without toolssur placecome to mean very little. Blood transfusions, neonatal screening, prenatal diagnoses, protein analyses of disorders...

  10. CHAPTER FIVE Localized Biologies: Mapping Race and Sickle Cell Difference in French West Africa
    (pp. 158-196)

    As French colonialism was coming to an end in the late 1950s, Senegal’s future president, Léopold Sédar Senghor, was among the few influential African politicians who held posts inAfrique occidentale francaise(AOF)¹ to argue that the newly independent African states should retain the form of a federation.² In his tractAfrican Socialism, he reasoned, “Wealth springs from the diversities of countries and persons, from the fact that they complement each other. We shall always remember a truth often expressed by Father Teilhard de Chardin: races are not equal but complementary, which is a superior form of equality.So it is...

  11. CHAPTER SIX Ordering Illness: Heterozygous “Trait” Suffering in the Land of the Mild Disease
    (pp. 197-220)

    In early December of 2003 the newly formed Senegalese Association for the Fight Against Sickle Cell Anemia (ASD) convened for the first time. The form of the forum was to be a dialogue between the principal member of the nascent group’s scientific advisory counsel, Dr. Diagne, and the mothers of his small patients. Diagne addressed the essentials of sickle cell care in Senegal: details of “crisis” prevention and assuaging the hallmark symptom of the disease, pain. Shortly into the discussion, one of the mothers seamlessly left the topic of her child’s pain, broaching that of her own. Her concern, quite...

  12. CHAPTER SEVEN The Work of Patient Advocacy
    (pp. 221-249)

    In 2001, sickle cell patients and researchers in France and in Francophone Africa met with a force that inspired them to act in concert to attempt a new kind of politics. The singular motivator for this emergent collective was a woman living in Paris, but originally from Congo Brazzaville, named Edwidge Ebakisse Badassou. Several of my French informants described this politically astute mother of a child with sickle cell disease as “indubitably persuasive.” Others, with less tendency to be emphatic, simply admired her ability “to get things done,” even if her commandeering demeanor could be offensive, or off-putting to some....

  13. CONCLUSION Economic and Health Futures amid Hope and Despair
    (pp. 250-274)

    In 2006 the global economy had already begun its downward spiral. When the fibers of the U.S. housing market began to give, a cascade of bankruptcies of large financial institutions in the United States and Europe followed. Before the huge losses, very early on, the flow of money gradually began to go from housing to commodities, namely oil, resulting in a commodity price bubble that drove up petrol prices from US$35 a barrel in early 2006 to US$140 in 2008. From the beginning, the small ripples that would culminate in the global crisis of 2007–2009 were already making large...

  14. NOTES
    (pp. 275-306)
    (pp. 307-328)
  16. INDEX
    (pp. 329-340)