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Title: BRCA mutation-negative women from Hereditary Breast and Ovarian Cancer susceptibility families: A qualitative study of the experience of cancer risk.
Authors: Bakos A,  Hutson S,  Loud J,  Peters JA,  Greene MH
Journal: Health Expectations
Date: 2008 Sep
Branches: CGB
PubMed ID:
PMC ID: not available
Abstract: Background: When women from families with a known BRCA1 or BRCA2 mutation test negative for the family mutation, it is assumed that they will transition their personal cancer risk perception from high- to average-risk. However, there are scant data regarding the experience of mutation-negative women after genetic testing disclosure, particularly related to the shift of risk perception from assumed mutation-positive to actual mutation-negative. This study was designed to explore cancer risk perception and the experience of being a mutation-negative woman within known BRCA1/2 mutation-positive family. Methods: We employed a qualitative descriptive design, convened a sample of 13 women who contributed in-depth, semi-structured telephone interviews (audio-recorded and transcribed verbatim), and performed qualitative content analysis with NVivo 2.0 software. Results: Six major content areas emerged from interview data: 1) rationale for initial involvement in the breast imaging study; 2) rationale for continued participation; 3) experience of living in a multiple-case family; 4) risk perception: the personal meaning of mutation-negative status; 5) opinions regarding cancer etiology; and 6) communication patterns between mutation-negative and mutation-positive family members. Conclusions: Living in an HOBC family is a complex experience that affects cognitive, emotional and social functioning. Our findings indicate that mutation-negative women may have unmet psychosocial needs that must be addressed by health care professionals, particularly in the primary care setting following genetic disclosure of a potentially reassuring result regarding their lack of the very high cancer risks associated with BRCA1/2 mutations.