Graduation Year

2025

Document Type

Thesis

Degree

M.A.

Degree Name

Master of Arts (M.A.)

Degree Granting Department

Anthropology

Major Professor

Elizabeth Miller, Ph.D.

Committee Member

Elena Lesley, Ph.D.

Committee Member

Nancy Romero-Daza, Ph.D.

Keywords

Biocultural health, Ethnographic content analysis, Health disparities, Medical anthropology

Abstract

Sickle cell disease (SCD) is the most common inherited blood disorder worldwide, with a disproportionate burden on people of African ancestry. Life with this illness is characterized by chronic physical pain, overlapping health conditions, and often early death. In the United States, the physical symptoms of the disease are frequently compounded by experiences of racial inequality and oppression embedded in the medical system that contribute to detrimental outcomes. Because of the complex biocultural web of factors contributing to the suffering of people with SCD, much of the anthropological scholarship surrounding this illness prioritizes deconstructing systems of power, oppression, and inequality. However, this passionate discourse stands in contrast to the contemporary rhetoric of optimism surrounding SCD from the general public. As of December 2023, the FDA approved two gene therapies with the capability of “curing” sickle cell disease. The possibility of this treatment, though still not yet widely accessible, has introduced a compelling enthusiasm to discussions about the future of SCD. Given the potential of such treatments in alleviating the chronic suffering that is characteristic of SCD, this thesis attempted to investigate popular media discourse to identify where the sources of hope truly are for people with SCD. This aim was pursued using an ethnographic content analysis (ECA) to compare discussions of hope in media by and about people with SCD. Participant observation and interviews were also conducted with a sickle cell advocacy group based in Tampa to provide a greater depth of understanding about attitudes towards hope and a “cure.” The findings of this study suggest that emergent gene therapies are not the primary source of hope for people with SCD. Instead, efforts to increase awareness, visibility, and community advocacy for those with the illness were observed to have a greater influence on feelings of hope.

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