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 one child <25 YO. Logistic regressions were utilized to evaluate associations with communication. Framework analysis was utilized to analyze open-ended responses. Results 253 parents completed interviews (61% response rate), reporting on 505 offspring. 29% of parents were BRCA1/2 mutation carriers. 334 (66%) offspring learned of their parent’s test result. Older offspring age (p<=0.01), offspring gender (female, p=0.05), parents’ negative test result (p=0.03) and parents’ education (high-school only, p=0.02) were associated with communication to offspring. The most frequently reported initial offspring responses were neutral (41%) or relief (28%). 13% 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. Conclusion 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 lifespan.

The psychological impact of genetic information on children: a systematic review

“…Sample sizes ranged from 10 33 to 505 34 children. Child participant ages ranged from 5 to <25 years 33,34 at the time of testing. The review captured 10 clinical guidance/perspectives articles discussing the psychological impact of genetic testing in children, six (60%) of which were published in the United States.…”

“…One study reported that 11% of parents perceived that their children had experienced distress in response to learning about the genetic status of their parents. 33 Another study reported that children's self-report scores for anxiety, depression, and behavioral problems were within the normal range and that most children worried about becoming sick a 'little bit of the time or less' (75%). 25 However, 55% acknowledged worrying 'a fair amount or more' about their risk of developing cancer and 50% reported worrying about a family member's risk.…”

“…16,17,29,43,46,47 Self-blame for test result 29,47 Harm to the parent-child bond 16,17,43,44,47 and sibling-sibling bond. 3,16,29,44 May upset emotional equilibrium of family 47 Eleven percent distressed after learning genetic status from parents 33 and 44% felt treated differently by parents, 37 but none felt differently treated by siblings. 40 Daughters of mothers tested for BRCA1/2 worried more about developing breast cancer 26 Harm to child's self-concept, 16,17,29 selfesteem, 29,44,46,47 self-worth (due to perceived failure to meet parent's expectations), 16,47 and self-image 27 Self-esteem normal at follow-up, despite results.…”

Human Subjects Protection: An Event Monitoring Committee for Research Studies of Girls From Breast Cancer Families

“…Although genetic testing and screening for breast cancer are not recommended for children and adolescents, early-life events (e.g., exposures, biologic changes) might modify risks for breast cancer in adulthood (12–15) and many health and risk behaviors begin in, or become established during adolescence (16–20). The majority of offspring in high-risk families learn of familial and genetic risks for breast cancer during childhood and adolescence (21–24). Little is known, however, about adolescent girls’ knowledge, attitudes and beliefs about breast cancer risks.…”

Psychosocial Adjustment in School-age Girls With a Family History of Breast Cancer

“…[4][5][6][7][8][9][10][11] Many parents discuss genetic and familial risk with their children, and some believe genetic testing should be permitted in adolescence. [12][13][14][15] Furthermore, some adolescent providers would consider testing a daughter of a BRCA1/2 mutation carrier. 16 Additionally, there are new guidelines recommending return of incidental genomic findings (including BRCA1/2 mutations) regardless of age.…”