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When parents disclose BRCA1/2 test results: Their communication and perceptions of offspring response
Version of Record online: 9 JAN 2012
Copyright © 2012 American Cancer Society
Volume 118, Issue 13, pages 3417–3425, 1 July 2012
How to Cite
Bradbury, A. R., Patrick-Miller, L., Egleston, B. L., Olopade, O. I., Daly, M. B., Moore, C. W., Sands, C. B., Schmidheiser, H., Kondamudi, P. K., Feigon, M., Ibe, C. N. and Daugherty, C. K. (2012), When parents disclose BRCA1/2 test results: Their communication and perceptions of offspring response. Cancer, 118: 3417–3425. doi: 10.1002/cncr.26471
- Issue online: 18 JUN 2012
- Version of Record online: 9 JAN 2012
- Manuscript Revised: 18 MAY 2011
- Manuscript Accepted: 18 MAY 2011
- Manuscript Received: 4 APR 2011
- the American Cancer Society, Mentored Research Scholar Award. Grant Number: MRSG 07-014-01-CPPB
- NIH. Grant Number: P30 CA006927
- genetic testing;
- hereditary breast cancer;
- psychosocial adaptation;
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.
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.
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.
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. Cancer 2012. © 2012 American Cancer Society.