Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to Children
- 1 May 2012
- journal article
- research article
- Published by Mary Ann Liebert Inc in Genetic Testing and Molecular Biomarkers
- Vol. 16 (5), 376-382
- https://doi.org/10.1089/gtmb.2011.0154
Abstract
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.Keywords
This publication has 25 references indexed in Scilit:
- Communication of BRCA Results and Family Testing in 1,103 High-Risk WomenCancer Epidemiology, Biomarkers & Prevention, 2010
- Parent Opinions Regarding the Genetic Testing of Minors for BRCA1/2Journal of Clinical Oncology, 2010
- Prevalence and correlates of mothers and fathers attending pretest cancer genetic counseling togetherPatient Education and Counseling, 2010
- On the development of a decision support intervention for mothers undergoing BRCA1/2 cancer genetic testing regarding communicating test results to their childrenFamilial Cancer, 2009
- Information Needs of Mothers Regarding CommunicatingBRCA1/2Cancer Genetic Test Results to Their ChildrenGenetic Testing, 2007
- To tell or not to tell: barriers and facilitators in family communication about genetic riskClinical Genetics, 2003
- An investigation of the disclosure process and support needs of BRCA1 and BRCA2 carriersAmerican Journal of Medical Genetics Part A, 2003
- American Society of Clinical Oncology Policy Statement Update: Genetic Testing for Cancer SusceptibilityJournal of Clinical Oncology, 2003
- Parent–child factors and their effect on communicating BRCA1/2 test results to childrenPatient Education and Counseling, 2002
- Parental communication of BRCA1/2 genetic test results to childrenPatient Education and Counseling, 2001