Clinical and Family Conversations Regarding Genetic Testing: A Case Study of Uncertainty Management

This study compares content in clinical and family interactions in the context of cancer-related genetic testing (CGT) of a patient with ovarian cancer. The sample was taken as an extreme instance from a larger study, representing participants in a situation with substantial uncertainty. Participants include a genetic counselor, a patient diagnosed with ovarian cancer who received a variant of uncertain significance (VUS) result, and her adult family members. Data include video recordings of the return-of-results genetic counseling session and the post-counseling family conversation, and survey responses from the patient and family members regarding emotions and communication satisfaction. Qualitative analysis revealed four themes: emotions talk, family talk, expressing uncertainty, and managing uncertainty. Interpretations were guided by uncertainty management theory constructs. Results regarding scientific or technical information, taken together with results regarding how to interpret test results, clinical and family recommendations, and implications for the family demonstrate the interconnected nature of uncertainty in this context. Results also demonstrate the emotional nature of uncertainty, including the critical role of social support for emotional attributions of uncertainty and quantitative results revealing that the patient had higher levels of anxiety and fear than her family members. This investigation represents an innovative approach to study actual interactions across clinical and family contexts, with findings that could be used to develop conversation strategies for patients to share CGT information with their families.