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How Often Do BRCA Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of BRCA Mutations to Minors and Young Adults

Angela R. Bradbury, James J. Dignam, Comfort N. Ibe, Sogyong L. Auh, Fay J. Hlubocky, Shelly A. Cummings, Melody White, Olufunmilayo I. Olopade, Christopher K. Daugherty

From the Department of Medicine, Section of Hematology-Oncology; MacLean Center for Clinical Medical Ethics; and the Department of Health Studies, University of Chicago, Chicago, IL

Address reprint requests to Christopher K. Daugherty, MD, 5841 S Maryland Ave MC2115, Chicago, IL 60657; e-mail: cdaugher{at}medicine.bsd.uchicago.edu

Purpose: Predictive genetic testing for adult-onset diseases is generally discouraged until the age at which interventions are believed to be helpful. Yet, many BRCA mutation carriers discuss their results with their children. This study describes the prevalence and experiences of parental communication of BRCA results to children under the age of 25 years old.

Patients and Methods: Forty-two BRCA mutation carriers completed semistructured telephone interviews assessing self-reported disclosure to offspring and parent experiences with disclosure. Qualitative responses were coded for themes. ² tests and logistic regression analyses with robust variance estimates were used to evaluate parent and child characteristics associated with disclosure.

Results: Fifty-five percent of parents reported discussing hereditary risk of cancer with at least one child. By parent report, 49% of the 86 offspring learned of their parents genetic test results or the hereditary cancer risk. Offspring age was strongly associated with disclosure (P = .001), and the majority of adolescent and adult children learned of the familial mutation or the hereditary risk of cancer. Parents reported that some offspring did not appear to understand the significance of the information shared, and that some offspring had initial negative reactions to disclosure. Physician (14%) and genetic counselor (21%) involvement in parent decisions to disclose were low.

Conclusion: Children of BRCA mutation carriers learn of their parents genetic test results many years before preventive interventions are indicated. Further research is needed to examine how young individuals understand this information and its psychosocial impact and influence on subsequent lifestyle and health behaviors.

Supported by Ralph and Marion Falk Medical Research Trust, Breast Cancer Research Foundation and Greenwall Foundation, Program in Bioethics.

Presented at the 41st Annual Meeting of the American Society of Clinical Oncology, May 13-17, 2005, Orlando, FL; and the 9th International Meeting on the Psychosocial Aspects of Genetic Testing for Hereditary Cancer, June 9-10, 2005, Philadelphia, PA.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.