A Qualitative Exploration of the Impact of Positive BRCA1/2 Mutation Status on the Lives of Young Women
- 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.
- 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.
- 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
- 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.
|BRCA1 Gene BRCA2 Gene|
|Study Design:||Observational Model: Family-Based
Time Perspective: Other
|Official Title:||A Qualitative Exploration of the Impact of Positive BRCA 1/2 Mutation Status on the Lives of Young Women|
- Conduct follow-up telephone interviews with participantswho were newly-tested at the time of original data collection to increase understanding of their mutationpositive experience longitudinally. [ Time Frame: ongoing ]
- Conduct two (2) focus group sessions at the JoiningFORCES Annual Conference, focusing on the unique geneticcounseling and support needs of women who consider or undergo genetic testing for BRCA1/2 prior to age 25. [ Time Frame: ongoing ]
|Study Start Date:||January 26, 2009|
Please refer to this study by its ClinicalTrials.gov identifier: NCT00858078
|United States, Maryland|
|National Cancer Institute (NCI), 9000 Rockville Pike|
|Bethesda, Maryland, United States, 20892|
|Principal Investigator:||Mark H Greene, M.D.||National Cancer Institute (NCI)|