When parents disclose BRCA1/2 test results: their communication and perceptions of offspring response.
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.
Department of Clinical Genetics, Fox Chase Cancer Center, Philadelphia, Pennsylvania 19111-2497, USA. Angela.Bradbury@fccc.edu
Angela R
AR
Bradbury
Linda
L
Patrick-Miller
Brian L
BL
Egleston
Olufunmilayo I
OI
Olopade
Mary B
MB
Daly
Cynthia W
CW
Moore
Colleen B
CB
Sands
Helen
H
Schmidheiser
Preethi K
PK
Kondamudi
Maia
M
Feigon
Comfort N
CN
Ibe
Christopher K
CK
Daugherty
D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D003142:Communication; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000235:genetics* / Q000523:psychology*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D010465:Perception; D014342:Truth Disclosure; D055815:Young Adult