Doctoral Dissertation Research Improvement Grant: Cultural Models of Genetic Screening & Perceptions of Sickle Cell Disease in High-Risk Guadeloupean French Communities

University Of Connecticut, Storrs CT

Investigators

Abstract

University of Connecticult doctoral student, Shan-Estelle Brown, supervised by Dr. Pamela I. Erickson, will undertake research on the relation between lay medical knowledge, risk perception, and decision making regarding preconceptive screening for recessive genetic diseases. Because carriers of recessive genetic diseases may have no symptoms, failure to access screening can result in the persistence of otherwise avoidable conditions. Brown hypothesizes that the decision not to seek testing is influenced by cultural factors, including understandings of genetic risk and perceptions of screening. The research will be carried out in Guadeloupe, the Caribbean department of France. Guadeloupe has a high prevalence of sickle cell disease, yet few residents of Guadeloupe seek testing to know their carrier status. To understand the sociocultural factors that may influence people's decisions to seek testing or not, Brown will conduct the research in neighborhoods near a sickle cell disease clinic. She will gather qualitative data through participant observation and semistructured and structured interviews, exploring factors that affect decision making about genetic testing such as kinship, religion, discrimination, and personal experience with sickle cell disease, as well as ethnomedical knowledge and perceptions of genetic screening. To determine the cultural models of the disease, she will use cultural consensus analysis (a form of principle components analysis) in a cross-sectional design that compares people who have been tested, who plan to be tested, and who do not plan to be tested. The research is important because carrier status ignorance can result in future generations of chronically sick children with an additional burden of care to families and the state. This research will assist genetic counselors by providing insight into how individuals make decisions about their own health and their children's health. It can help counselors aid clients in overcoming hesitance to share newly identified carrier status with relatives and partners. The project contributes to the education of a social scientist.