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

Tercyak KP, Mays D, Demarco TA, Peshkin BN, Valdimarsdottir HB, Schneider KA, Garber JE, Patenaude AF.

Source

Authors' Affiliations: Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, District of Columbia; Mount Sinai School of Medicine, New York, New York; and Dana-Farber Cancer Institute, Boston, Massachusetts.

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 aged 8 to 21 years 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 before 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 versus positive results [OR = 3.11; 95% confidence interval (CI), 1.11-8.71; P = .03], their child was 13 years of age or more versus 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). Postdecision 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. Cancer Epidemiol Biomarkers Prev; 22(7); 1260-6. ©2013 AACR.