BRCA1/2 testing in minors received mixed parental support

Many parents are opposed to the genetic testing of minors for BRCA1 and BRCA2 mutations due to a lack of medical indication, the possibility of inducing stress among minors and a potential lack of maturity in adolescents younger than age 18.

“Approximately half of parents undergoing BRCA1 and -2 testing support the genetic testing of minors in some or all circumstances and parent opinions appear to be influenced by their test experience,” said Angela R. Bradbury, MD, director of the Margaret Dyson Family Risk Assessment Program at Fox Chase Cancer Center in Philadelphia, during her presentation at the 2008 ASCO Annual Meeting.

Bradbury and colleagues interviewed 153 parents who had undergone testing for BRCA1 and -2 with children younger than age 25 at the time of testing to evaluate their opinions on whether or not minors should be tested and their reasoning for their responses.

“In response to the dichotomous question, ‘Do you think minors should be given the opportunity to be tested for BRCA1 and -2?’ 58% of participants were opposed to testing minors for BRCA mutations,” Bradbury said.

Testing support was related to having younger offspring, receiving a true negative test result and being of racial minority. Whereas the most frequently supported reasons for testing opposition were the lack of a medical indication (58%), the potential to provoke distress in minors (58%) and the potential lack of maturity before the age of 18 years (45%).

“The most frequently reported reason for unconditional support was the perception that the information could foster preventive behaviors. Other frequently reported reasons for unconditional support were the belief that minors and their parents have a right to testing and that there is no harm in testing at an early age,” Bradbury said. – by Stacey L. Adams

Should testing in minors be permitted? The use of the word ‘permitted’ has certain implications. It is worthwhile to take a step back and consider why this is such a tough question. First, it involves conflicts between many of the ethical principles that we use to make decisions in difficult circumstances like this. We have to balance the autonomy of the minors themselves and their parents and their beliefs about the potential beneficial effects of testing against the physician or provider’s concern not to do any harm. There are conflicting perspectives on this, of course. The parent or minor come in seeking self knowledge, and genetic information is somewhat different from other kinds of information in this respect. They are actually trying to find out something about themselves, but they are seeking that knowledge against an unequal power balance. Although direct-to-consumer testing through web-based mechanisms is certainly increasing in prevalence, right now access to testing pretty much has to go through a health care provider.

– Mark Robson, MD

Clinical Director, Clinical Genetics Service and Breast Cancer Medicine Services,
Memorial Sloan-Kettering Cancer Center, New York

For more information:
Bradbury AR, Patrick-Miller L, Feigon M et al. Should genetic testing for BRCA1/2 be permitted for minors? Opinions of parents who completed BRCA1/2 testing. Presented at: 2008 ASCO Annual Meeting; May 30-June 2, 2008; Chicago.