J Genet Med.  2011 Dec;8(2):105-112.

Communication with Family Members about Positive BRCA1/2 Genetic Test Results in Korean Hereditary Breast Cancer Families

Affiliations
  • 1Department of Surgery, Seoul National University Bundang Hospital, Seongnam, Korea. brcakorea@gmail.com
  • 2Department of Preventive Medicine, Seoul National University College of Medicine, Seoul, Korea.
  • 3Department of Biomedical Science, Seoul National University Graduate School, Seoul, Korea.
  • 4Cancer Research Institute, Seoul National University, Seoul, Korea.
  • 5Department of Surgery, Ajou University School of Medicine, Suwon, Korea.
  • 6Department of Radiation Oncology, Sungkyunkwan University School of Medicine, Seoul, Korea.
  • 7Department of Surgery, Sungkyunkwan University School of Medicine, Seoul, Korea.
  • 8Department of Surgery, Ewha Womans' University Medical Center, Seoul, Korea.
  • 9Department of Surgery, Asan Medical Center, College of Medicine, University of Ulsan, Seoul, Korea.
  • 10Department of Surgery, Soonchunhyang University Hospital, Seoul, Korea.
  • 11Korean Breast Cancer Society, Korea.

Abstract

PURPOSE
Sharing genetic information with family members is important for cancer awareness and prevention. The purpose
of this study is to examine disclosure patterns of positive BRCA genetic test results to patients' relatives.
MATERIALS AND METHODS
A total of 106 probands who had positive BRCA genetic test results from the Korean Hereditary Breast Cancer Study participated in our study. Subjects were asked whether they had disclosed their genetic test results to first-, second-, and third-degree relatives. Univariate and multivariate analyses were used to identify factors associated with positive result sharing with close and distant relatives.
RESULTS
In total, 99 respondents (93.4%) informed at least one at-risk relative of the test result, and they all reported that they had disclosed their genetic test result to a first-degree relative. Communication of test results to other relatives occurred significantly less often, with only 31 of 99 subjects (31.3%) sharing their results with second- or third-degree relatives. In the results of univariate analyses, disclosure of genetic test results to more distant relatives was associated with marital status and months since post-test counseling. The reasons for communication were to provide information about the BRCA-related cancer risk and to recommend the genetic test.
CONCLUSION
Most individuals with the BRCA mutation share their test results with first-degree family members; however, these results reach more distant relatives significantly less often. Therefore, it is necessary to encourage patients' communication with extended family members through systematic genetic counseling.

Keyword

BRCA1/2 mutation; Communication; Genetic counseling
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