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National Cancer Institute U.S. National Institutes of Health www.cancer.gov
Clinical Genetics Branch

Recruiting Young Female BRCA1/2 Carriers to Participate in Confidential Interview Study

Researchers from the Clinical Genetics Branch (CGB) at the National Cancer Institute, in collaboration with the University of Maryland School of Public Health, are conducting an interview study of women who are aware of their positive BRCA1/2 mutation status during young adulthood. Participants will be asked to take part in a 1-2 hour recorded telephone interview, during which they will be asked to discuss the following:

  • Personal and family history of breast/ovarian cancer
  • Experience with genetic counseling and disclosure
  • Previous, current, and/or future couple relationships
  • Family formation
  • Previous, current and planned strategies for risk management/risk reduction

In order to participate, women must meet all of the following criteria:

  • Currently aged 18-35
  • Tested positive for a disease-related BRCA1 or BRCA2 mutation
  • Able to speak and understand English fluently
  • Have previously, are currently, or will at some point in the future contemplate a couple relationship, family formation, and/or risk management/reduction

In addition, women 18-35 who have tested positive for a BRCA1/2 mutation and who will be attending the 2009 Joining FORCEs Annual Conference (to be held May 15-16, 2009 in Orlando, FL) will also be invited to participate in a focus group session. Focus group participants will be asked to review preliminary anonymized data and analyses from the interviews, and to participate in a group discussion led by the researcher. You may participate in the focus group regardless of whether you do or do not participate in the interview component of the study.

Interested individuals are invited to contact Lindsey M. Hoskins, MS, LGMFT via telephone (301-402-1995) or e-mail hoskinsl@mail.nih.gov. A brief telephone screening interview (less than 10 minutes in length) will be required to determine whether eligibility criteria are met. If eligible, participants will be required to read, sign, and return NCI Informed Consent documents prior to participating in either the interview or focus group.