Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to Children
Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to ChildrenTo cite this article:
McKane E. Sharff, Tiffani A. DeMarco, Darren Mays, Beth N. Peshkin, Heiddis B. Valdimarsdottir, Judy E. Garber, Katherine A. Schneider, Andrea F. Patenaude, and Kenneth P. Tercyak. Genetic Testing and Molecular Biomarkers. -Not available-, ahead of print. doi:10.1089/gtmb.2011.0154.
Online Ahead of Print: November 15, 2011
McKane E. Sharff,1 Tiffani A. DeMarco,1 Darren Mays,1 Beth N. Peshkin,1 Heiddis B. Valdimarsdottir,2 Judy E. Garber,3 Katherine A. Schneider,3 Andrea F. Patenaude,3 and Kenneth P. Tercyak1
1Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, District of Columbia.
2Mount Sinai School of Medicine, New York, New York.
3Dana-Farber Cancer Institute, Boston, Massachusetts.
Aim: Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children. Methods: This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8–21 years). Data include parents' perceived needs for family communication decision support, decision motivations, and parent-child communication. Results: Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129)=2.47; p=0.01]. Parent-child communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77)=−3.29; p=.002]. Conclusions: Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing.