Abstract
Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being—yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.
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Funding
This study was funded through a Seed Grant from the College of Liberal Arts at Texas A&M University.
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Emily Rauscher and Marleah Dean were responsible for the conception and design of the work and collection of interview data. Emily Rauscher, Marleah Dean, and Gemme Campbell were involved in analysis of interview data and drafting and revising the manuscript. Emily Rauscher has final approval of the version to be published. Emily Rauscher and Marleah Dean are accountable for all aspects of the accuracy and integrity of the work.
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Emily Rauscher, Marleah Dean, and Gemme Campbell declare they have no conflict of interest.
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All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
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No animal studies were carried out by the authors for this article.
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Rauscher, E.A., Dean, M. & Campbell-Salome, G.M. “I Am Uncertain About What My Uncertainty Even Is”: Men’s Uncertainty and Information Management of Their BRCA-Related Cancer Risks. J Genet Counsel 27, 1417–1427 (2018). https://doi.org/10.1007/s10897-018-0276-y
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DOI: https://doi.org/10.1007/s10897-018-0276-y