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The phases of disclosing BRCA1/2 genetic information to offspring
Author(s) -
Clarke Susan,
Butler Kate,
Esplen Mary Jane
Publication year - 2008
Publication title -
psycho‐oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.41
H-Index - 137
eISSN - 1099-1611
pISSN - 1057-9249
DOI - 10.1002/pon.1344
Subject(s) - offspring , genetic counseling , genetic testing , feeling , breast cancer , cancer , grounded theory , psychology , medicine , developmental psychology , genetics , social psychology , biology , qualitative research , pregnancy , sociology , social science
Objective: Women who carry a genetic mutation for hereditary breast/ovarian cancer (BRCA1 or BRCA2) are at high risk to develop cancer. A positive genetic test result also has implications for a BRCA1/2 carrier's offspring who each have a 50% chance of inheriting the mutation. The dissemination of BRCA1/2‐related information by carriers to offspring is not well understood. Our study examines the experiences of BRCA1/2 carriers in communicating genetic information to their offspring using a grounded theory approach. Methods: Qualitative data were obtained from a multi‐site group therapy trial for BRCA1/2 carriers with primary themes identified and coded using the constant comparison technique and verified by team members. Results: Female participants had a mean age of 45.4 years, 83% were married, 71% had children (ranging from ages 2 to 30 years) and 45.9% had a prior diagnosis of cancer. Dissemination of genetic information by BRCA1/2 carriers to their offspring was described as a process involving several distinct phases with specific challenges within each phase. Several themes were identified including dilemmas on ‘if’ and ‘when’ to disclose to offspring, concerns should offspring receive a positive test result for BRCA1/2, dilemmas around feeling a need to protect versus the need to inform, and women as being the primary communicators. Conclusion: These findings have implications for genetic counselling as well as follow‐up. Copyright © 2008 John Wiley & Sons, Ltd.