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The Enculturated Gene

Sickle Cell Health Politics and Biological Difference in West Africa

Duana Fullwiley

Publication Year: 2011

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.

Some images inside the book are unavailable due to digital copyright restrictions.

Published by: Princeton University Press

Title Page, Copyright, Dedication

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pp. i-vi


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p. vii-vii

List of Illustrations

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p. viii-viii

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pp. ix-xxiv

...anomaly? Th is 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...

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pp. xxv-xxviii

...with his or her structures of support and care. Th e second is that any contribution to expanding our vision about how the world works is always born of a time and place—a context rich in people and ideas that nurture how we imagine new framings for what...

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Chapter One: Introduction: The Powers of Association

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pp. 1-44

...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 the hospital.” She surveyed me like sport as I divided my attention between the faulty gutters and locating...

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Chapter Two: Healthy Sicklers with “Mild” Disease: Local Illness Affects and Population-Level Effects

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pp. 45-76

...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...

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Chapter Three: The Biosocial Politics of Plants and People

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pp. 77-118

...French colonial administration, peters out when one leaves the urban center and the adjoining area of le plateau . The plateau was the central hub of French West Africa’s colonial and...

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Chapter Four: Attitudes of Care

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pp. 119-157

...with sickle cell, such as beta and alpha thalassemia, or more specifically, the techniques to properly carry them out, are limited or nonexistent once researchers return home...

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Chapter Five: Localized Biologies: Mapping Race and Sickle Cell Difference in French West Africa

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pp. 158-196

...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...

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Chapter Six: Ordering Illness: Heterozygous “Trait” Suffering in the Land of the Mild Disease

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pp. 197-220

...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...

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Chapter Seven: The Work of Patient Advocacy

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pp. 221-249

...attention to sickle cell disease would be raised through the theme of “North- South” development collaborations. This thematic became reality when Ebakisse Badassou organized the first International Congress of the International Organization to Combat Sickle Cell Anemia at the United...

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Conclusion: Economic and Health Futures amid Hope and Despair

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pp. 250-274

...their livelihoods of fishing were no longer sustainable. Chinese, Japanese, and European fishing companies, who for years used massive trawlers, dramatically overfished the Senegalese waters, gradually putting many locals out of work. In 2006, West Africa, but Senegal...


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pp. 275-306


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pp. 307-328


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pp. 329-340

E-ISBN-13: 9781400840410
E-ISBN-10: 1400840414
Print-ISBN-13: 9780691123172
Print-ISBN-10: 0691123179

Page Count: 368
Publication Year: 2011

Edition: Course Book

Research Areas


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Subject Headings

  • Sickle cell anemia -- Social aspects -- Senegal.
  • Sickle cell anemia -- Genetic aspects.
  • Sickle cell anemia -- Patients -- Services for -- Senegal.
  • Genetic disorders -- Social aspects -- Senegal.
  • Kinship -- Health aspects -- Senegal.
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