An Identity Crisis for Sickle Cell Disease in Brazil Open Access

Creary, Melissa Shawn (2016)

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The concept of race and its contribution to health disparities has garnered global attention and has planted itself firmly in medical, public health, and scientific discourse. The current debate over the epidemiology of health disparities reflects long-standing disagreement about the meaning of the concept of race in science. The interpretation of this concept cannot be separated from the epistemology of its creators. This is especially the case in the interpretation of race and admixture in sickle cell disease (SCD), particularly in Brazil. SCD is often ascribed to African ancestry, but it is a marker for ancestry in a geographic location where malaria is or was prevalent. Despite this, the cultural malleability of biology and the subsequent definition of racial disparity allows for SCD to be produced in different ways. This dissertation is based on eighteen months of collective ethnographic fieldwork data gathered primarily in Brasília, Rio de Janeiro, and Salvador, Brazil between 2011 and 2014. It examines how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of sickle cell disease (SCD) as a "black" disease, despite a prevailing cultural ideology of racial mixture. This multi-level identity crisis is in constant contestation of competing racial frameworks at the micro, meso, and macro level. I explore how the multiple constructions of SCD in Brazil demonstrate the cultural malleability of biology via political processes of sickle cell disease (SCD)-based social policy. I examine the experiences of those who draw upon both the sickle gene and African heritage to make competing claims upon the State as well as legitimize their belonging to a social group. Ultimately, I argue that SCD represents a deep entanglement of biology and culture as shown through Brazilian actors who attempt to gain access to fuller participation in society through what I call biocultural citizenship--a flexible mode of enacting belonging that varies depending on skin color, social class, recognition of African lineage and other identifiers. This analysis provides lessons relevant to both Brazil and the US on how future policy can be designed. Specifically, I examine how policy developed around specific population groups can be measured against policy framed in relation to a specific disease.

Table of Contents

Preface--The Assignation of Blackness


Positionality and Limitations

Organization of the Dissertation

Chapter One--The Contemporary Trajectory of Historical Quandaries

Part I: Background

Part II: Research Sites

Part III: Research Data and Methods

Part IV: Methodology

Part V: Analysis

Chapter Two-- Contestations of Citizenship and the Cultural Malleability of Biology

Mutual Inclusion: Policy Making for Sickle Cell Disease in Brazil

Part I: Sickle Cell Disease, Race, and Nation

Historical Constructions of Race and Nation in Brazil

Classification and Brazilian Conceptions of Race

Genetics, Race, Identity Politics, and Bounded Justice

Sickle Cell Disease

The Construction of Sickle Cell Disease

Situated Knowledges

Part II: Negotiating Citizenship

Aspirational Citizenship

Biological Citizenship and Sickle Cell Disease

Cultural Citizenship: Diasporic Membership in Hegemonic Spaces

Biocultural Citizenship

Chapter Three-- Color, Class, and Claims: Narratives of Biocultural Citizenship

Characteristics of the Sample

The Narrators

Structural Boundaries





Chapter Four-- Bicultural Competence and Policy Formation:

A Story of Elite Engagement

Repression and Liberation

Capital Building and Investment

Race Gets a Promotion

Growing Pains

Bicultural Competency

An Unstable Seat at the Table

A Social and Political Convergence

Chapter Five--Conclusion: Strategies in Belonging

About this Dissertation

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