A Qualitative Exploration of the Impact of Positive BRCA1/2 Mutation Status on the Lives of Young Women

Background: * Mutations detected in the BRCA1 or BRCA2 genes have been show to produce very high risks of breast and ovarian cancer (as high as 90% and 60%, respectively), as well as accompanying risks for several other types of cancer. Women who have these genetic anomalies and who do not have cancer are aware of their high-risk status, which can have an effect on their ability to make decisions about personal choices and health care. * Researchers are interested in learning more about how people who know their cancer risk status make decisions on personal relationships, family formation, and risk-reduction options. Objectives: \- To study young women s experiences and decision-making processes regarding family history, genetic testing, couple relationships, family formation, and cancer risk management within the context of their experiences as BRCA1/2 mutation carriers. Eligibility: * Women between the ages of 18 and 35 years of age and older who have been identified as having a BRCA1 or BRCA2 mutation. Participants must be contemplating or have experienced couple relationships, family formation, and/or risk management and reduction. * Participants must be willing to have their interviews digitally recorded Design: * Researchers will conduct between 30 and 50 telephone interviews of study participants. Each interview will be approximately 90 minutes in length. The interview consists of open-ended questions that ask about the participants and their experiences before, during, and after they underwent genetic testing for BRCA1/2. * At least one focus group will be coordinated at a national conference for individuals who are aware of their genetically based cancer risk. If more than 25 individuals are interested in participating in the group, an additional focus group will be convened. * No medical treatments are specifically offered as a part of this study.

Sex

Female

Minimum age

18 Years

Maximum age

100 Years

* INCLUSION CRITERIA:
* Participants must be biologically female
* Participants must have reached their 18th birthday but not have passed their 35th birthday
* Participants must be able to speak and understand English with a level of fluency sufficient for completion of the recorded telephone interview
* Participants must have completed genetic testing for BRCA1/2 and received a positive test result (i.e., a deleterious or disease-related mutation was identified).
* Participants must have experienced or be contemplating/planning couple relationship(s), formation of a family, and/or utilization of risk management/reduction strategies at some point.

EXCLUSION CRITERIA:

-Potential participants will be excluded from the study if they do not agree to have their interview or focus group contributions audio recorded.

• BACKGROUNDWerner-Lin A, Hoskins LM, Doyle MH, Greene MH. 'Cancer doesn't have an age': genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18-24. Health (London). 2012 Nov;16(6):636-54. doi: 10.1177/1363459312442420. Epub 2012 Apr 30. PMID 22547552
• BACKGROUNDHoskins LM, Roy KM, Greene MH. Toward a new understanding of risk perception among young female BRCA1/2 "previvors". Fam Syst Health. 2012 Mar;30(1):32-46. doi: 10.1037/a0027276. PMID 22429077
• BACKGROUNDHoskins LM, Greene MH. Anticipatory loss and early mastectomy for young female BRCA1/2 mutation carriers. Qual Health Res. 2012 Dec;22(12):1633-46. doi: 10.1177/1049732312458182. Epub 2012 Aug 27. PMID 22927701