Most Parents Who Get Tested for Breast Cancer Genes Share Results with their Children

PHILADELPHIA (January 9, 2012) – A new study has found that when parents get tested for breast cancer genes many of them share their results with their children—even with those who are very young. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study also revealed that most parents think that their children are not distressed when they learn about the test results.  

For parents, one of the primary motivations for getting tested for hereditary cancer genes is to better understand the risk that their children face; however, many parents struggle with the decision of whether, and when, to tell their minor children the results of such tests. To help determine what factors make parents more or less likely to report their test results to their children, Angela Bradbury, MD, of Fox Chase Cancer Center in Philadelphia, and her colleagues interviewed 253 parents who had genetic testing for mutations in two common breast cancer–related genes (BRCA1 and BRCA2) that can be inherited. All parents had children under the age of 25 at the time of the genetic test. The investigators asked parents whether they told their children their test results, and if they did, how they felt their children reacted to the information.

Genetic testing revealed that 29 percent of parents had a BRCA gene mutation that confers an increased risk of developing breast cancer. The majority of parents in the study shared their results with at least one of their children. (Among 505 children, 334 [66 percent] learned of their parents’ test results.) Parents were more likely to report their results to older children; however, about half of ten to 13 year olds, and some even younger children were told of their parents’ test results. Also, parents were more likely to share negative test results—meaning no mutation was found—particularly if the child was female. Most of the parents reported that test results did not appear to distress their children, although distress was more likely when the test revealed a mutation in one of the breast cancer genes and when the child was under ten years old.

“We know that adolescence is a time when children establish many important health behaviors they continue in adulthood. An understanding about children’s reactions to these communications may assist parents in their decisions about whether, or when, to share their genetic test results,” said Dr. Bradbury. “This could also help parents begin conversations with their children that can encourage them to adopt healthy behaviors but not cause them distress,” she added. Such early conversations about cancer risk may provide parents with opportunities to promote protective health behaviors—such as eating a healthy diet and not smoking—that could help keep their children cancer-free.

Fox Chase Cancer Center (Fox Chase), which includes the Institute for Cancer Research and the American Oncologic Hospital and is a part of Temple Health, is one of the leading comprehensive cancer centers in the United States. Founded in 1904 in Philadelphia as one of the nation’s first cancer hospitals, Fox Chase was also among the first institutions to be designated a National Cancer Institute Comprehensive Cancer Center in 1974. Fox Chase is also one of just 10 members of the Alliance of Dedicated Cancer Centers. Fox Chase researchers have won the highest awards in their fields, including two Nobel Prizes. Fox Chase physicians are also routinely recognized in national rankings, and the Center’s nursing program has received the Magnet recognition for excellence six consecutive times. Today, Fox Chase conducts a broad array of nationally competitive basic, translational, and clinical research, with special programs in cancer prevention, detection, survivorship, and community outreach. It is the policy of Fox Chase Cancer Center that there shall be no exclusion from, or participation in, and no one denied the benefits of, the delivery of quality medical care on the basis of race, ethnicity, religion, sexual orientation, gender, gender identity/expression, disability, age, ancestry, color, national origin, physical ability, level of education, or source of payment.

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