ICARE Newsletter Summer 2013

Sharing BRCA Test Results with Adolescent and Young Adult Children—What Does the Latest Research Show?

While there are specific recommendations against BRCA testing for minors,1 guidelines are less clear about whether parents should share their own test results with their children. Because there are no recommended surveillance or risk reduction options prior to age 25 for known BRCA mutation carriers, there has been debate about balancing the benefits of sharing parents’ test results with the possible negative psychosocial outcomes. The largest published study on this topic included 253 parents who had undergone BRCA testing and their reports of sharing test results with children, ranging in age from ages 10 to 25. Of the 505 children, parents shared test results with 66%. For those who shared true negative results, children often expressed relief. However, the authors encourage parents to take this opportunity to discuss the continued benefits of positive health behaviors (e.g., diet, physical activity); despite decreased cancer risk based on BRCA test results. Importantly, parents sharing BRCA positive or variant of uncertain significance results perceived distress more frequently than those sharing negative results.2 Parents considering sharing test results with children may benefit from consultation with a genetic and/or other health care professional with expertise in family communication to help ensure that information is presented in a way that is age-appropriate, helps to reduce distress, and achieves positive psychosocial and behavioral outcomes.

1. Borry P, et al. Clin Genet 70:374-81, 2006. 2. Bradbury AR, et al. Cancer, 2012.

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