Genetic Counseling, Testing: Telling Kids About Inherited Cancer Risk

However, researchers also found that when the co-parent--a spouse, partner or other adult involved in the upbringing and care of the children--attended the genetic counseling session with the woman, they were more informed about genetic testing and had much more interaction and communication with their children than those who did not attend, said Tiffani A. DeMarco, lead author of the study.

"The bottom line is that moms are really the gatekeepers of the information about genetic testing," said DeMarco, a genetic counselor and clinical coordinator of the cancer genetics program at Georgetown University's Lombardi Cancer Center and the Washington Cancer Institute/Washington Hospital Center. "But women can potentially benefit from having a co-parent who attends the counseling session because they will be more likely to understand what the mom is going through and more likely to be able to communicate some of that to their children."

Georgetown University Medical Center researchers interviewed 97 women undergoing genetic testing for breast cancer and 97 of their co-parents. The women were undergoing genetic counseling for hereditary breast and ovarian cancer risk and providing a blood sample for BRCA1/2 genetic testing. Those interviewed had children between the ages of 8 and 21 years. About 35 percent of the co-parents attended the pre-test genetic counseling session.

"Parents who undergo counseling are much more likely to have talked to their children about cancer in general and felt that they needed to reassure them about their worries," DeMarco said.

The study is part of ongoing research from a team at the Washington, D.C.,-based Lombardi Cancer Center. Earlier research found that up to 50 percent of parents disclose the results of genetic breast cancer tests to a child less than 18 years old within one month of learning of the woman's carrier status.

Patients interviewed received genetic counseling at the Lombardi Cancer Center, the Ruttenberg Cancer Center in New York, and the Dana-Farber Cancer Institute, Boston.