Cultural Models of Genetic Screening & Perceptions of Sickle Cell Disease in High-Risk Guadeloupean French Communities

An adult deciding to be tested for sickle cell disease considers numerous issues including an understanding of genetic inheritance, cultural values of kinship and identity, worries about stigma and discrimination, and the perceived impact of the results on the individual\u27s life. To test populations of citizens considered at risk, health systems at national and local levels institute screening programs to identify carriers for sickle cell trait, a genetic predisposition with the potential to pass on the disease to children if the other parent is also a carrier. These screening programs often occur as obligatory testing for newborn babies and voluntary testing for adults. ^ Sickle cell disease is a global illness impairing the health outcomes of children of various ethnicities and geographic origins. A number of studies on this disease only assess individuals\u27 biomedical knowledge. This dissertation presents a critical medical anthropological approach that critiques biomedical knowledge as the primary method to understand perceptions about a medical technology. I investigate how knowledge about sickle cell disease in an at-risk community is constructed and communicated between individuals and between institutions and individuals. ^ A mixed-methods strategy was used to collect quantitative and qualitative data during a field study in Guadeloupe, an overseas region of France in the West Indies. One in eight citizens is a carrier for sickle cell disease, yet less than one percent of the population annually seeks information and services. The archipelago\u27s colonial history continues to shape overlapping political and cultural identities of the ethnically mixed population. Results from participant observation, pile sorting, interviewing, and survey data relate sickle cell disease in relation to other important conditions. Findings also uncover conflicting attitudes about difference, interpersonal relationships and experiential knowledge, and social motivations to protect information about oneself from the community. The study suggests a need to consider broader interpretations of perceptions of self and understandings about genetic disease and associated medical technologies beyond a solely biomedical framework.