BRCA Gene: Should Parents Communicate Risk?
Karen Kramer's children were 9, 14 and 16 when she told them she'd tested positive for a harmful BRCA gene mutation, putting her at much higher risk of developing breast and ovarian cancer. The news had serious implications for her health and theirs, but Kramer said she never once considered keeping it a secret.
"The only thing that I did hold back a little is the fact that they can interhit this mutation," said Kramer, 47. Women who inherit a harmful mutation may also have higher risk of additional cancers, like cervical and uterine; men may be at greater risk of pancreatic, stomach and other cancers.
"My older children, both boys, understood that," she told HuffPost. "My daughter, who was 9 at the time, didn't understand that this was something that could happen to her. But she is 12 now, and she does."
According to new research, Kramer's decision to discuss her results is far from uncommon.
It suggests that in spite of debate about the advantages and disadvantages of early communication of genetic risk to children, the majority of parents who undergo testing for BRCA, or the "breast cancer gene," share their results with their children -- even if those children are relatively young.
In the study, published in the journal Cancer, more then 66 percent of 505 children under 25 learned of their parents' genetic test result, whether positive or negative. Older children were more likely to be informed, but approximately half of the 10- to 13-year-olds were told of their parents' results. Many children ages 10 and younger were also told.
"What we have learned from this study is that parents are really discussing this information with their children, and in some cases, at relatively young ages," said Dr. Angela Bradbury, with the Fox Chase Cancer Center and first author on the study. "This study helps us look at how we might change our counseling to focus on how best to communicate the information."
The new research is among the first to shed a light on how children handle the news, finding that most cope relatively well. Only 11 percent of the children were upset, scared, avoidant or fatalistic after learning about their parents' test results, and distress was more common in children under 10.
"One of the questions we all have and we all worry about in this area is 'how much information is too much?'" said Jill Stopfer, genetic counselor at Penn Medicine's Abramson Cancer Center. "'Are we hopefully helping our children and not hurting them?'"
While Stopfer said there is no one right answer, she stressed that the new results highlight a pressing need for individuals to undergo testing in concert with a qualified provider, or genetic counselor. Generally, screening for BRCA 1 and 2 mutations is not recommended until individuals are 25 years old, and primary care physicians do not necessarily have the experience necessary to help families anticipate and work through these concerns, she said, explaining she has worked with many families in which children who are coping poorly because they did not have proper support.
Ultimately, Stopfer said, the decision of whether to share or not comes down to parental judgement.
Kramer, who works part-time in marketing for FORCE, a nonprofit aimed at fighting hereditary breast and ovarian cancer, said she has come into contact with many women who have opted not to share their positive BRCA test results with their children, for fear of burdening them with concerns about their own future and health. Many may prefer to wait until their children are at testing age.
Kramer hopes that sharing the news has empowered her children to take control of their own health at a young age, when many long-term health behaviors are formed. She does, however, have moments of doubt.
"I worry sometimes, yes, I think maybe we should have hidden this from them," Kramer admitted. "But when I think about my family and how we operate, we're communicators. I think it was really a better decision to tell them."
And these are questions parents will continue to face for years, particularly as genetic testing becomes more common.
"The genetic testing possibilities are going to be exploding in the near future, when people will be increasingly tested for a whole litany of things," Stopfer said. "We're all going to have to think about it."