The phases of disclosing BRCA1/2 genetic information to offspring.
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.


CONCLUSIONS
These findings have implications for genetic counselling as well as follow-up.
Clarke
Susan
S
Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
Butler
Kate
K
Esplen
Mary Jane
MJ
D000293:Adolescent; D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics*; D002648:Child; D002675:Child, Preschool; D003142:Communication; D030881:Disclosure; D005195:Family Relations; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005820:Genetic Testing / Q000379:methods; D006801:Humans; D010287:Parent-Child Relations; D055815:Young Adult