Genetic Testing and Post-Testing Decision Making Among BRCA-positive Mutation Women

• In Event: 193 - Regular Session. Decision Making and Trust in Health Care

Abstract

Through an analysis of an online-survey of women who have tested positive for the BRCA genetic mutation for breast cancer, this research uses a social construction and feminist standpoint lens to understand the decision making process by which BRCA- positive women come to get genetic testing and how they socially construct and understand their risk for developing breast cancer as well as what treatment options they undergo post-testing. BRCA-positive women re-frame their statistical medical risk for getting cancer and their decisions about the type of treatment to pursue post-testing by making decisions within a broad psycho-social context of engagement including their social networks. Important psychological factors drive women’s medical decisions--such as how guilty, vulnerable and how much support or non-support a woman perceives within her immediate family and her wider social networks. Women who felt guilty and fearful that they might pass the BRCA gene to their family were found to be more likely to have surgery. Those women who had at least one daughter and/or were childless compared to those women who had just sons, were more inclined toward the surgical option. These psychological and social network engagements serve as a “nexus of decision making" that does not, for the most part, mirror the medical assessment of statistical odds of their cancer risk or the specific treatment protocol framed by the medical establishment.

Authors

• Sharlene J. Hesse-Biber, Boston College

• Chen An, Boston College