By Lisa Sheppard MD
As genetic testing has given women and men a trove of information about their health and risk for disease, it has also created a new challenge for parents and medical experts: when to share information with children who may inherit a genetic risk. In genetic medicine, minors typically are not tested for BRCA mutations, which increase the risk of adult-onset breast and ovarian cancers. The worry is that children often lack the maturity to fully understand the implications of a genetic risk, and that they shouldn’t be burdened with the knowledge until they are adults who can participate in the decision to be tested or not. Many experts recommend waiting to test until 25, the age at which screenings such as M.R.I.s and mammograms are encouraged for high-risk women.
A 2015 study of more than 200 girls ages 11 to 19 found that while adolescent girls from families that carry BRCA1 or BRCA2 mutations worry more about the risk of breast cancer, they have similar levels of psychosocial adjustment, and in fact have higher self-esteem, compared to their average-risk peers. Whether to tell children and when and how to tell them is one of the most common reasons people seek support in the process of genetic testing. But some developmental specialists suggest that adolescents may benefit from learning that a mutation runs in their family because the potential threat is distant, giving them time to develop coping strategies and resilience if they test positive as adults. Often teens feel that finding out about the potential risk so early gives them a sense of control. But not everyone agrees. Dr. Ruth Oratz, a medical oncologist and breast cancer specialist at NYU Langone’s Perlmutter Cancer Center, worries that parents who inform their children about a potential genetic risk do not alleviate anxiety but instead hamper their teenager’s ability to live freely. Some feel that the stress of not knowing is worse than knowing and opt for testing. Some women feel that the burden of knowledge is too big for adolescents.
There can be a tremendous sense of guilt about the possibility of passing along a harmful gene. It is an instinct to protect your child, but the randomness of the inherited mutations can leave a parent feeling very helpless especially if the child does test positive for the gene. It is important for parents to remember that what they pass on to their children is far greater than one gene alone. Parents also show children how to cope when life gets hard and what to do in times of uncertainty. Parents have control about what kind of parents they want to be.
How the risk is communicated also matters. Daughters are more likely to be anxious if mothers are anxious. Adults should get the support they need first by talking to genetic counselors or a therapist before sharing the information with their children or siblings. Experts recommend using your child’s age, personality and maturity as a guide. Be straightforward and honest but don’t use confusing euphemisms or dump everything on your child at once. Keep an open-door policy about questions, share your feelings and know that it’s O.K. to say, “I don’t know.”
If you have any further questions, we are here for you at the PINK Breast Center. 908-284-2300 or 973-977-6662