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Genetic Testing

Should You Share This Information with Your Kids?

by Angela R. Bradbury, MD, Colleen Burke Sands, MPH,
and Linda Patrick-Miller, PhD

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Since the discovery of two breast cancer genes, BRCA1 and BRCA2, in the 1990s, testing for a mutation (a change that can lead to cancer) in those genes has become an important part of cancer risk assessment. If a woman has a mutation in the BRCA1 or BRCA2 gene, her chances of getting breast or ovarian cancer are greatly increased.

Thousands of women have had BRCA testing to evaluate their risk for breast and ovarian cancer. After testing, many people and their doctors are able to make decisions about their healthcare, for example, when to start cancer screening tests, such as mammograms. But another decision – if and when parents should tell their children – is less clear.

Genetic testing for cancer-related genes, such as BRCA1 and BRCA2, is not recommended for children under the age of 18. This is because the cancers that are related to these genes are adult cancers. Also, doctors do not recommend mammograms until adulthood. But is there a benefit in telling your children about your own genetic test results?

Many Parents Discuss Their Genetic Test Results with Their Children Interviews with parents who have had BRCA testing reveal that most parents do tell their children about their test results. Parents were more likely to tell their older children, but children as young as age four had been told. Parents who had negative test results (no mutation) were more likely to tell their children; however, some parents who did have a BRCA mutation also told their children. The most common reason for parents to share their test results with their children was to provide them with information that could increase their health awareness. Some parents told their children to help them understand why there were so many cancers in the family or why the parent was having preventive surgery. Parents of children approaching adulthood shared their test results so the children could be tested.

The most common reason parents gave for not sharing test results was that they thought their child was too young. Parents were also concerned about the possibility that their child might worry about their own health. Some parents felt sharing the information was not necessary because the child was already aware of their family’s history of cancer.

The most common reason for parents to share their test results with their children was to provide them with information that could increase their health awareness.

Should You Tell Your Children Your Results? Most parents consider the child’s age or maturity level when deciding whether to share their test results. Current research suggests that many children are not distressed by this information.

Research is being done now to help us understand how children feel about learning about genetic testing and cancer risk in their family. In the meantime, the following tips from Dr. Paula Rauch and her colleagues at the Marjorie E. Korff PACT (Parenting at a Challenging Time) Program, a resource for parents with a serious illness, may also help in this situation:

  • Let your child’s age and maturity guide you.
  • Communicate directly with your child; the worst way to hear something is to overhear it.
  • Use correct terminology; euphemisms can confuse your child.
  • Sharing your feelings is OK; it gives your child permission to do the same. h Respect your child’s preference to talk, or not to talk.
  • Welcome your child’s questions.
  • Answer sincerely. “I don’t know, but we can find out” might be the most appropriate answer.

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Dr. Angela R. Bradbury is a medical oncologist and medical ethicist at Fox Chase Cancer Center in Philadelphia, PA, who specializes in breast cancer treatment, cancer risk assessment, and research involving ethical dilemmas that arise during predictive genetic testing. Colleen Burke Sands is a health educator and project manager in the Risk Assessment Program at Fox Chase Cancer Center. Dr. Linda Patrick-Miller is a clinical psychologist in the Hereditary Oncology Prevention and Education Program and is director of Behavioral Sciences at the Cancer Institute of New Jersey in New Brunswick, NJ.

For more information on parenting during cancer and to learn more about the Marjorie E. Korff PACT Program, visit www.mghpact.org.

For additional genetic testing resources, visit Coping's Cancer Survivors Guide.

This article was published in Coping® with Cancer magazine, January/February 2011.