title: The Genetic Testing Experience of BRCA-Positive Women: Deciding Between Surveillance and Surgery.
abstract: Little is known about how the breast cancer (BRCA) gene mutation affects women's decision-making processes. I use a feminist standpoint lens to explore the process by which BRCA-positive women came to socially construct and understand their risk for developing breast and/or ovarian cancer and the treatment options they elected post-testing. This study included in-depth interviews with 64 BRCA-positive mutation women, some of whom sought surveillance and others who opted for preventive surgical intervention. The in-depth analysis and case study approach revealed a complex cancer risk assessment resulting in a "nexus of decision making" that does not mirror a statistical medical model of risk assessment. The particular configuration of women's nexus of decision making impacted their pre- and posttesting BRCA experience as empowering or disempowering, regardless of whether they elected surgery or surveillance. I discuss the implications for development of clinical strategies that will serve to enhance women's pre- and post-BRCA decision making.
authors.affiliation: Boston College, Chestnut Hill, Massachusetts, USA hesse@bc.edu.
authors.forename: Sharlene
authors.initials: S
authors.lastname: Hesse-Biber
keywords: breast cancer; cancer, screening and prevention; case studies; decision making; feminism; genetics; lived experience; women’s health