Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual's experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women's cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.
Keywords: Familial risk; Genetic testing; Oncology; Risk comprehension; Risk perception.