Decisional Outcomes of Maternal Disclosure of BRCA1/2 Genetic Test Results to Children

Abstract

Background Although BRCA1/2 genetic testing is discouraged in minors, mothers may disclose their own results to their children. Factors affecting patients’ disclosure decisions and patient outcomes of disclosure are largely unknown. Methods Mothers (N = 221) of children ages 8-21 enrolled in this prospective study of family communication about cancer genetic testing. Patients underwent BRCA1/2 genetic counseling and testing, and completed standardized behavioral assessments prior to and 1-month following receipt of their results. Results Most patients (62.4%) disclosed BRCA1/2 test results to their child. Patients were more likely to disclose if they received negative or uninformative vs. positive results (OR = 3.11; 95% CI = 1.11 - 8.71; P = .03), their child was ≥ 13 years of age vs. younger (OR = 5.43; 95% CI = 2.18 - 13.53; P < .001), and as the ratio of patients’ perceived benefits of disclosure outweighed potential risks (OR = 2.40; 95% CI = 1.63 - 3.54; P < .001). Post-decision satisfaction about disclosure was lowest among nondisclosing patients (P < .001) and those reporting greater decisional conflict (P < .001). Conclusions Patients commonly discuss their BRCA1/2 results with their teenage and young adult children, especially if the information is perceived as beneficial. Satisfaction with disclosure decision-making remains lowest among nondisclosing and conflicted patients. Family communication decision support adjuncts to genetic counseling are needed to help ameliorate these effects. Impact This study describes the prevalence of family communication about maternal BRCA1/2 genetic testing with minor children, and decisions and outcomes of disclosure.

Women’s concerns about the emotional impact of awareness of heritable breast cancer risk and its implications for their children

“…At enrollment, participants enumerated their children. As we and others have done in the previous research (Burrows and Kelley 1983;Tercyak et al 2013), for those with more than one child, we used a computerized randomization software to designate a target child of interest within the study age range to alleviate parental selection, reduce bias, and maintain 1:1 parent-child dyads for statistical analysis. Participants completed telephone interviews within several days of genetic counseling.…”

“…Women who are counseled and tested for mutations in BRCA1/ 2 genes who have minor-aged children confront difficult decisions about if, when, and how to share hereditary breast cancer risk information with their children (Sharff et al 2012;Tercyak et al 2013). Most of the findings in this area have centered on decisions and outcomes surrounding disclosure or nondisclosure to potentially at-risk relatives (Patenaude et al 2006).…”

Modeling the dyadic effects of parenting, stress, and coping on parent–child communication in families tested for hereditary breast-ovarian cancer risk

“…Parents of minor children who seek genetic testing may be particularly vulnerable to communication- related challenges, as they must navigate decisions about whether, when, and how to share aspects of their genetic testing experience with their children and adult relatives. Although many parents undergoing genetic testing ultimately disclose risk information to their children [26–28], others do not. All parents struggle with balancing a respect for keeping children informed about health risks in the family with a desire to protect them from potentially distressing information that they may not be cognitively or emotionally prepared to receive or able to medically act upon [29].…”

Using a Historical Lens to Envision the Next Generation of Genomic Translation Research

“…Beginning as early as 1993 [8] and continuing on [9,10,11,12,13,14], a number of social and behavioral scientists have called for efforts to align research to anticipate and evaluate how best to apply genomic discoveries to benefit an array of public health and medical outcomes. These efforts have been fueled by the anticipation of common ‘translation roadblocks' presented by clinical integration and public health deployment of new technologies that will impede health impact if unaddressed [15].…”