Date of Award

2014

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Karen A Brooks

Abstract

Objective: To examine if BRCA1/2 mutation carriers who received their positive genetic test result by age 25 were satisfied with their decision to undergo genetic testing and with the choices made regarding family planning, surveillance, and surgery. Methods: 72 participants recruited via social media completed a survey hosted by SurveyMonkey.com. Sixty-three met study criteria and were asked 40 quantitative and qualitative questions designed to assess family planning, surveillance, and surgery needs of young BRCA carriers, which included a six question Satisfaction with Decision Scale. Results: Regardless of age, participants were very satisfied with the decision to undergo genetic testing. Recommendations were made for the counseling and care of BRCA1/2 mutation carriers under age 25, which included: (1) Right Reproductive Organs, (2) Risk Reducing Mastectomy, (3) Risk Figures, (4) Reproductive Options, and (5) Resource for Future. Conclusions: Participants desired more clear and unbiased care and counseling, where they felt supported. The complexity of HBOC plus the variable lives BRCA1/2 positive emerging adults face led us to propose a core set of counseling recommendations for young BRCA mutation carriers under age 25. Incorporating the five recommendations is essential to achieving full patient autonomy and unbiased decision facilitation.

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