Parenting through genetic uncertainty: themes in the disclosure of breast cancer risk information to children

Genet Test Mol Biomarkers. 2012 May;16(5):376-82. doi: 10.1089/gtmb.2011.0154. Epub 2011 Nov 15.


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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Adult
  • Breast Neoplasms / genetics*
  • Breast Neoplasms / psychology
  • Child
  • Decision Making
  • Female
  • Genes, BRCA1
  • Genes, BRCA2
  • Genetic Counseling
  • Genetic Predisposition to Disease*
  • Genetic Testing
  • Humans
  • Male
  • Middle Aged
  • Parent-Child Relations*
  • Parents / psychology*
  • Truth Disclosure*
  • Uncertainty
  • Young Adult