What Does It Mean to Live 'At Risk?' The Case of Huntington Disease
Healthy bodies, rather than the sick or diseased, are the focus of medical attention in the current age of risk. This is especially evident in the field of predictive genetic testing. Few empirical studies have explored the subjective meanings of living 'at risk' for individuals and their families. Drawing upon 24 semi-structured interviews with at risk persons and their family members, this study explored the meanings associated with genetic risk for the adult-onset disorder, Huntington Disease (HD). Qualitative data analysis revealed that genetic risk for HD was not understood as an objective numerical fact. Rather, genetic risk was a negatively-charged concept, experienced as a personal or familial threat. Genetic risk had a moral dimension, related to notions of responsibility and blame. Tested participants, in particular, felt a responsibility to the next generation, to current and future partners, to plan for their futures and to communicate their risk to others. Implications of these findings for research and clinical practice are discussed.
01 Jan 2004
31 Dec 2006
St. John's, NL
Strategic Research Theme
Well-being, Health and Biomedical Discovery