When Angela Durden found out that she had tested positive for the breast cancer gene mutation, she decided to share the information with her daughter, Alexis, who was 14 at the time. That meant telling the teenager about her own future risk — that she had a 50 percent chance of carrying a mutation that had already riddled their extended family — both male and female — with the disease.
Alexis’s first concern was that her mother might get sick or maybe die. But Ms. Durden was less prepared for what Alexis said next. The teenager wanted to be tested, too. “I was totally shocked,” said Ms. Durden, a small-business owner in San Diego. “She said she would get tested as soon as she could and if she was positive, she was going to have a double mastectomy.”
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.
“We aren’t seeing huge red flags about negative outcomes for them,” says Dr. Angela Bradbury, lead author of the study and an assistant clinical professor of medicine at the University of Pennsylvania.
“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,” said Karen Hurley, a clinical psychologist specializing in hereditary cancer risk.
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.
Anabel Getz, a 19-year-old freshman at Georgetown University learned at 15 that the faulty BRCA gene in her family could impact her life. “I have so much time to make peace with what might happen and make decisions if I test positive,” said Ms. Getz, who has not been tested. And finding out about the potential risk so early gave her a sense of control, she said. “It forces me to think about the kind of things I want later in life. I have a fear that I’ll get cancer before I have a family and establish a career so I want to do those things at a young age.”
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. “Every time someone touches her breast or every time she takes her bra off, you think she’s not thinking about it?”
Dr. Jill Stoller, a pediatrician in New Jersey who carries a BRCA mutation, decided to tell her daughter, Jenna, then an eighth grader, about the family risk while planning for surgery after a breast cancer diagnosis. “I felt I had to give her context for the major surgery I was having.” In the ensuing years they didn’t talk much about genetic status but a week before her 18th birthday, Jenna asked to be tested and learned that she also had the mutation.
“She told me that the stress of not knowing was worse than knowing,” Dr. Stoller said.
Some women feel that the burden of knowledge is too big for adolescents. In 2009, when Ann Little, a special-education teacher from Boxborough, Mass., learned that she carried the BRCA gene, she told her three older children but chose not to tell her youngest daughter, who was 13 at the time. “I hated the idea that just as she was starting to develop breasts, she would have to think about losing them,” Ms. Little said. “It would be a huge, dark cloud hanging over her. The worst part of the mutation,” she said, “is that you burden your kids with this.”
There can be a tremendous sense of guilt about the possibility of passing along a harmful gene. “It’s a primal instinct to protect your child. The randomness of inherited mutations can leave parents feeling very helpless,” said Dr. Hurley.
Dr. Stoller describes finding out that Jenna tested positive as one of the hardest days of her life. “I understood how my father felt when he found out that he had passed the gene on to me. He said, ‘This is not the legacy I wanted to leave my family.’”
Dr. Hurley reminds parents that what they pass on to their children is far greater than one gene alone. “You can show them how you cope when life gets hard and what you do in times of uncertainty,” Dr. Hurley said. “You have control about what kind of parent you want to be.”
How the risk is communicated also matters. “Daughters are more likely to be anxious if mothers are anxious,” Dr. Bradbury said. She suggested that adults get the support they need first by talking to genetic counselors or a therapist.
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.”
Dr. Stoller’s daughter, Jenna, now 27, is scheduled to have a prophylactic bilateral mastectomy in June.
Ms. Durden’s daughter, Alexis, tested positive for the gene when she was 18 and underwent a prophylactic double mastectomy the week before she turned 20. She and her mother got matching pink ribbon tattoos with the words: Risk Everything. Fear Nothing.
“Alexis was very well educated when she made her decision,” Ms. Durden said. “She has no regrets and for that I am grateful.”