Angela R. Bradbury, M.D. is an Associate Member at the Fox Chase Cancer in the Divisions of Population Science and Medical Science and Director of the Margaret Dyson Family Risk Assessment Program. She was formerly faculty at the University of Chicago and the MacLean Center for Clinical Medical Ethics. Her research interests focus on ethical dilemmas in cancer risk assessment and predictive genetic testing for hereditary cancer.
Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring†
Article first published online: 15 JAN 2008
Copyright © 2008 Wiley-Liss, Inc.
American Journal of Medical Genetics Part C: Seminars in Medical Genetics
Special Issue: Children and Genetics: Ethics and Policy
Volume 148C, Issue 1, pages 70–77, 15 February 2008
How to Cite
Bradbury, A. R., Patrick-Miller, L., Pawlowski, K., Ibe, C. N., Cummings, S. A., Olopade, O. I. and Daugherty, C. K. (2008), Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring. Am. J. Med. Genet., 148C: 70–77. doi: 10.1002/ajmg.c.30163
How to cite this article: Bradbury AR, Patrick-Miller L, Pawlowski K, Ibe CN, Cummings SA, Olopade OI, Daugherty CK. 2008. Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring. Am J Med Genet Part C Semin Med Genet 148C:70–77.
- Issue published online: 23 JAN 2008
- Article first published online: 15 JAN 2008
- Greenwall Foundation, Program in Bioethics
- American Society of Clinical Oncology, Young Investigator Award
- American Cancer Society. Grant Number: MRSG-07-014-01-CPPB
- genetic testing;
Although professional guidelines recommend against testing minors for adult-onset genetic conditions, the genetic testing of minors for BRCA1/2 alterations has been debated in the literature. To better understand the opinions of BRCA mutation carriers regarding the genetic testing of minors and the cognitive and affective processes underlying these opinions, we interviewed BRCA mutation carriers and their adult offspring who had learned of their parent's BRCA mutation. Semi-structured interviews were conducted with 53 parents and 22 offspring. In response to a closed-ended question, 52% (n = 39) of participants were opposed to the testing of minors. Responses to an open-ended question indicate that many participants (24%, n = 18) feel that testing could be permitted for some minor offspring. Psychological risks and the insufficient maturity of minors were frequent concerns of participants opposed to testing minors. The potential to impact health behaviors was frequently cited as a reason to support the genetic testing of minors. These preliminary results suggest that many BRCA mutation carriers and their adult offspring have concerns about, or are opposed to the genetic testing of minors. However, a significant minority in our study would support testing minors. Greater support for testing among offspring could indicate increasing requests for early genetic diagnosis. Further research is necessary to explore the risks and benefits of providing genetic testing to minors for adult-onset hereditary cancer syndromes in order to inform clinical practice and public policy and to ensure optimal psychosocial and medical outcomes for all members in families at risk for genetically determined disease. © 2008 Wiley-Liss, Inc.