title: All in the family: evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results.
abstract: Despite the potential importance of family communication, little is known about the process and content of communicating BRCA1/2 test results to relatives. The objectives of this observational study were to describe the process and content of communicating BRCA1/2 test results to sisters, and to evaluate whether the proband's carrier status influenced communication outcomes. Participants were 43 women who were the first family member to have genetic testing (probands). Probands reported on communication outcomes for 81 sisters. Process and content variables were evaluated 1-month after receipt of BRCA1/2 test results using the Family Communication Questionnaire (FCQ). Overall, BRCA1/2 test results were communicated to 85% of sisters, and carriers communicated their results to significantly more sisters compared to uninformative (96% vs. 76%, FET = 0.02). The most important reason for communicating results was to provide genetic risk information; however, compared to uninformatives, carriers communicated their results to significantly more sisters to obtain emotional support (74%) and to get advice about medical decisions (42%) (FET = 0.001). Carriers also discussed the possibility of discrimination and recommendations for cancer management with significantly more sisters. Among sisters to whom BRCA1/2 test results were not communicated, the most important reason for not sharing test results was because of emotionally distant relationships. The results of this study suggest that probands are likely to quickly communicate their BRCA1/2 test results to relatives and that although needs for social support may motivate family communication, emotionally distant relationships may be a barrier to communication with relatives.
authors.affiliation: Department of Psychiatry, University of Pennsylvania, Philadelphia, Pennsylvania 19104, USA. chanita@mail.med.upenn.edu
authors.forename: Chanita
authors.initials: C
authors.lastname: Hughes
authors.forename: Caryn
authors.initials: C
authors.lastname: Lerman
authors.forename: Marc
authors.initials: M
authors.lastname: Schwartz
authors.forename: Beth N
authors.initials: BN
authors.lastname: Peshkin
authors.forename: Lari
authors.initials: L
authors.lastname: Wenzel
authors.forename: Steven
authors.initials: S
authors.lastname: Narod
authors.forename: Camille
authors.initials: C
authors.lastname: Corio
authors.forename: Kenneth P
authors.initials: KP
authors.lastname: Tercyak
authors.forename: Danielle
authors.initials: D
authors.lastname: Hanna
authors.forename: Claudine
authors.initials: C
authors.lastname: Isaacs
authors.forename: David
authors.initials: D
authors.lastname: Main
mesh_terms: D000328:Adult; D024682:BRCA2 Protein / Q000235:genetics*; D001943:Breast Neoplasms / Q000235:genetics / Q000517:prevention & control; D003142:Communication; D005260:Female; D019398:Genes, BRCA1; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D006801:Humans; D008875:Middle Aged; D009042:Motivation; D009679:Nuclear Family; D010051:Ovarian Neoplasms / Q000235:genetics / Q000517:prevention & control
chemical_list: D024682:BRCA2 Protein