Many Parents Share Genetic Test Findings With Kids
FRIDAY Aug. 17, 2007 -- As genetic testing for diseases becomes more commonplace, the impact of those findings on family members may be underestimated, researchers say.
For instance, some women who discover they have the BRCA gene mutation, which puts them at higher risk for breast cancer, choose to tell their children about it before the children are old enough to understand the significance or deal with it, a new study found.
"Parents with the BRCA mutation are discussing their genetic test results with their offspring often many years before the offspring would need to do anything," said study author Dr. Angela Bradbury, director of the Fox Chase Cancer Center's Family Risk Assessment Program, in Philadelphia.
According to Bradbury, more than half of parents she surveyed told their children about genetic test results. Some parents reported that their children didn't seem to understand the significance of the information, and some had initial negative reactions to the news.
"A lot of genetic information is being shared within families and there hasn't been a lot of guidance from health-care professionals," Bradbury said. "While this genetic risk may be shared accurately, there is risk of inaccurate sharing."
In the study, Bradbury's team interviewed 42 women who had the BRCA mutation. The researchers found that 55 percent of parents discussed the finding and the risk of breast cancer with at least one of their children who was under 25.
Also, most of the women didn't avail themselves of the services of a doctor or genetic counselor in helping to tell their children, Bradbury's group found.
Bradbury is concerned that sharing genetic information with young children can create anxiety. "The children could be overly concerned about their own risk at a time when there is nothing that they need to do," she said.
But, she added, "it may be possible that sharing may be good for children in adapting to this information."
The findings are published in the Aug. 20 issue of the Journal of Clinical Oncology.
The lack of definitive data on when -- or if -- to discuss genetic test results with children is a real problem, Bradbury said.
"As we move genetic testing forward for cancer or other illnesses, we have to consider the context of the whole family and focus our counseling to the whole family, and not just the person who comes in for testing," Bradbury said. "We should learn more about how and when we should talk to children about this, so that we can promote healthy behaviors without causing too much anxiety for the offspring."
Barbara Brenner, executive director of Breast Cancer Action, agreed that the psychological component of genetic testing needs more attention.
"This is the tip of a very scary iceberg," Brenner said. "We don't know the psychological consequences [of BRCA testing], not only to the person who has the test, but to her family members."
Brenner thinks guidelines to help parents deal with this information are needed. So is help from doctors and genetic counselors in counseling family members, especially children, she added.
For more on genetic testing, visit the U.S. National Library of Medicine.
Posted: August 2007