title: Genetic Testing and Post-Testing Decision Making among BRCA-Positive Mutation Women: A Psychosocial Approach.
abstract: Through an analysis of an online survey of women who tested positive for the BRCA genetic mutation for breast cancer, this research uses a social constructionist and feminist standpoint lens to understand the decision-making process that leads BRCA-positive women to choose genetic testing. Additionally, this research examines how they socially construct and understand their risk for developing breast cancer, as well as which treatment options they undergo post-testing. BRCA-positive women re-frame their statistical medical risk for developing cancer and their post-testing treatment choices through a broad psychosocial context of engagement that also includes their social networks. Important psychosocial factors drive women's medical decisions, such as individual feelings of guilt and vulnerability, and the degree of perceived social support. Women who felt guilty and fearful that they might pass the BRCA gene to their children were more likely to undergo risk reducing surgery. Women with at least one daughter and women without children were more inclined toward the risk reducing surgery compared to those with only sons. These psychosocial factors and social network engagements serve as a "nexus of decision making" that does not, for the most part, mirror the medical assessments of statistical odds for hereditary cancer development, nor the specific treatment protocols outlined by the medical establishment.
authors.affiliation: Department of Sociology, Boston College, McGuinn Hall 419, 140 Commonwealth Avenue, Chestnut Hill, Boston, MA, 02467, USA. sharlene.hesse-biber@bc.edu.
authors.forename: Sharlene
authors.initials: S
authors.lastname: Hesse-Biber
authors.affiliation: Department of Educational Research, Measurement, and Evaluation, Boston College, Chestnut Hill, Boston, MA, USA.
authors.forename: Chen
authors.initials: C
authors.lastname: An
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics / Q000517:prevention & control* / Q000601:surgery; D003657:Decision Making; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D065286:Prophylactic Surgical Procedures; D011795:Surveys and Questionnaires
keywords: At risk assessment; BRCA-positive mutation; Breast cancer; Genetic testing; Women’s decision-making