When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response

Abstract

Background: BRCA1/2 testing is not recommended for children, as risk reduction measures and screening are not generally recommended before 25 years old (YO). Little is known about the prevalence and predictors of parent communication to offspring and how offspring respond to this communication.

Methods: Semi-structured interviews were conducted with parents who had BRCA1/2 testing and at least 1 child <25 YO. Logistic regressions were utilized to evaluate associations with communication. Framework analysis was utilized to analyze open-ended responses.

Results: A total of 253 parents completed interviews (61% response rate), reporting on 505 offspring. Twenty-nine percent of parents were BRCA1/2 mutation carriers. Three hundred thirty-four (66%) offspring learned of their parent's test result. Older offspring age (P ≤ .01), offspring gender (female, P = .05), parents' negative test result (P = .03), and parents' education (high school only, P = .02) were associated with communication to offspring. The most frequently reported initial offspring responses were neutral (41%) or relief (28%). Thirteen percent of offspring were reported to experience concern or distress (11%) in response to parental communication of their test results. Distress was more frequently perceived among offspring learning of their parent's BRCA1/2 positive or variant of uncertain significance result.

Conclusions: Many parents communicate their BRCA1/2 test results to young offspring. Parents' perceptions of offspring responses appear to vary by offspring age and parent test result. A better understanding of how young offspring respond to information about hereditary risk for adult cancer could provide opportunities to optimize adaptive psychosocial responses to risk information and performance of health behaviors, in adolescence and throughout an at-risk life span.

Fig 1

a. Parent disclosure of BRCA1/2 test results by parent test result (n=505 offspring) *p-value=0.015 for hypothesis test of general difference in disclosure rates among genetic test result groups using Wald test from GEE-fit logistic regression. TN = true negative test result, UN = uninformative negative test result (negative mutation without a known BRCA1/2 mutation in the family), VUS = variant of uncertain significance, POS = BRCA1/2 mutation b. Parental disclosure of BRCA1/2 test results by offspring event age* (n=505 offspring) *offspring age when their parent disclosed parent’s test results to offspring, or if parent did not disclose their test result to offspring, the age of child at study interview **p-value<0.001 for hypothesis test of general difference in disclosure rates among age groups using Wald test from GEE-fit logistic regression.

Fig 1

a. Parent disclosure of BRCA1/2 test results by parent test result (n=505 offspring) *p-value=0.015 for hypothesis test of general difference in disclosure rates among genetic test result groups using Wald test from GEE-fit logistic regression. TN = true negative test result, UN = uninformative negative test result (negative mutation without a known BRCA1/2 mutation in the family), VUS = variant of uncertain significance, POS = BRCA1/2 mutation b. Parental disclosure of BRCA1/2 test results by offspring event age* (n=505 offspring) *offspring age when their parent disclosed parent’s test results to offspring, or if parent did not disclose their test result to offspring, the age of child at study interview **p-value<0.001 for hypothesis test of general difference in disclosure rates among age groups using Wald test from GEE-fit logistic regression.

Figure 2

A. Perceived offspring responses by parent test result TN = true negative test result, UN = uninformative negative test result (negative mutation without a known BRCA1/2 mutation in the family), VUS = variant of uncertain significance, POS = BRCA1/2 mutation B. Perceived offspring responses by offspring age at disclosure C. Perceived offspring responses by offspring gender

Figure 2

A. Perceived offspring responses by parent test result TN = true negative test result, UN = uninformative negative test result (negative mutation without a known BRCA1/2 mutation in the family), VUS = variant of uncertain significance, POS = BRCA1/2 mutation B. Perceived offspring responses by offspring age at disclosure C. Perceived offspring responses by offspring gender

Figure 2

A. Perceived offspring responses by parent test result TN = true negative test result, UN = uninformative negative test result (negative mutation without a known BRCA1/2 mutation in the family), VUS = variant of uncertain significance, POS = BRCA1/2 mutation B. Perceived offspring responses by offspring age at disclosure C. Perceived offspring responses by offspring gender