Should You Share  A Higher Genetic Risk?

If you learned that you were at high risk of cancer because you carry the hereditary BRCA1/2 gene mutation, would you tell your children? A recent study at Fox Chase Cancer Center not only considered that question, but also took it to the next level and studied the parent perceptions of the impact of such a decision on children.   BRCA1/2 are hereditary gene mutations that indicate an increased risk of developing breast cancer.

"We know that many people who carry the BRCA1/2 gene mutation share their genetic test results with their children," explained Angela Bradbury, MD, medical oncologist at Fox Chase and lead author on the study. "What we did not know was the impact this communication has on their children." 

In order to learn the impact this has on children, researchers evaluated results from 163 parents who had BRCA1/2 testing. Of those, 52 tested positive for BRCA1/2. Just over 100 parents (66 percent) shared their results with at least one of their children, which totaled 323 children who were between the ages of 5 – 25. The child's age and parent cancer history had a direct correlation to whether or not they shared the results. Not surprising, those without a BRCA1/2 mutation were more likely to communicate test results than parents with a mutation.

Among parents who disclosed their results, few reported negative reactions from their children (9 percent) or that their child did not understand the information (11 percent). Overall, most parents reported that their children handled the information well, although negative reactions were more frequent among certain subgroups (younger children and those of parents with a mutation or a variant of uncertain significance).

"Many parents share genetic test results with their children," said Bradbury. "According to our research, most parents do not perceive their children to have adverse reactions to this information, although children who learn their parent tested positive for the BRCA1/2 mutation or a variant of uncertain significance may be more susceptible to initial negative reactions. We certainly need to learn more about how children respond to this information."

Further research with parents and children will be done to explore psychosocial and behavioral responses to learning of hereditary risk during childhood and adolescence, and to inform the development of interventions to optimize adaptive responses to early communication of genetic risk.

The study will be presented at the 2009 Annual Meeting of the American Society of Clinical Oncology.  Abstract #1511:  Parent perceptions of offspring responses to parental communication of BRCA1/2 test results. General Poster Session, Sunday, May 31, 2:00-6:00 p.m. — Level 2, West Hall C

Mothers Who Share Risks Feel Better

Mothers who share cancer genetic test results with their children are more satisfied with their decision than those who decide not to tell, according to a new study by researchers at the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center. The study also shows, for the first time, what role fathers play in disclosing mother's test results.

"What we're seeing is that both parents make decisions about revealing predictive genetic test results to children within a relatively short period of time even though there is no immediate health implication for children to learn that news," says the study's lead investigator Kenneth Tercyak, PhD, an associate professor of oncology and pediatrics at Lombardi.

Still, the study team found that mothers who made the decision to disclose their test results were more satisfied than those who decided not to disclose the results. The researchers also report that mothers who disclosed test results to their children experienced a more open parent-child communication relationship--a possible benefit of disclosure, Tercyak says.

Researchers interviewed the parents (221 mothers and 124 co-parents who were predominantly fathers) prior to the mother receiving her test results for a BRCA1 or BRCA2 genetic alteration and again one and six months later. BRCA1 and BRCA2 are the two genes scientists know are responsible for a majority of inherited breast and ovarian cancer cases. Sixty-three percent of mothers talked with their children about the test results within one month of receiving them, as did 44 percent of fathers. Sixty-eight percent of the mothers and 55 percent of the fathers subsequently talked with their children about the results within six months of testing. Mothers were more likely to discuss results than were fathers, especially when testing revealed no alterations and when the children were older.

"We needed to better understand how common it is for moms and dads to talk with their children about cancer running in the family and how they reach those decisions," says Tercyak. "Children growing up in families surrounded by cancer can be worried about whether cancer may happen to them someday. Cancer genetic tests provide a piece of that information."

"It is an important part of the genetic counseling process to help parents make decisions about talking to their children about cancer in the family, and what cancer genetic test results do and do not mean for themselves and their family's health," explains Beth Peshkin, MS, CGC, a genetic counselor at Lombardi and a co-author of the study. "Although we do not yet know how to offset familial risks of cancer in future generations, it can be very empowering for parents to promote positive health habits in their children early on, like not smoking, eating a well-balanced diet, exercising regularly, and avoiding excess exposure to the sun."

"Cancer is a family matter. It's not surprising that we're seeing moms and dads working together to share this information with their children," says Tercyak. "Our ongoing research focuses on a family-centered approach to supporting parents' decisions about whether and when to talk with children about cancer genetic test results. Given what we've learned, the timing of these conversations can be important."

Tercyak and the study's co-authors report no related financial interests. Additional partners in this research included scientists from the Dana-Farber Cancer Institute in Boston, MA and the Mount Sinai School of Medicine in New York, NY. The work was funded by a grant from the National Human Genome Research Institute's Ethical, Legal, and Social Implications research program at the National Institutes of Health.

These findings will be presented at the 45th Annual Meeting of the American Society of Clinical Oncology (ASCO) in Orlando May 29 - June 2.