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Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.

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Sharing Genetic Information with Children

by Susan Lilly

Dr. Angela Bradbury (Basser Research Center, University of Pennsylvania) presented information along with two other panelists, Lisa Schwartz, Ph.D. (Children’s Hospital of Philadelphia), and Linda Patrick-Miller, Ph.D. (Center for Clinical Cancer Genetics and Global Health, University of Chicago) about the results of sharing BRCA mutation status with children.

Current guidelines state that children under the age of 18 should not be tested for BRCA mutations because the increased cancer risk applies to adults. However, Dr. Bradbury acknowledged that elegant arguments exist on either side of the debate. Screening guidelines for women with mutations begins at age 25, except in cases where the family history includes breast cancer in the early 20s.

Dr. Bradbury discussed results of the Evaluating Parent to Offspring Communication for Hereditary Disease (EPOCH) study. The good news is that the majority of children were not distressed by their parent’s positive test results. Not surprisingly, a small but significant percentage of children felt concern (13%) or stress (11%) if results were positive or a “variant of uncertain significance.”

The Study of Female Teens (SOFT) is a survey study for mothers and their 11- to 19- year-old daughters to learn what girls know about breast cancer risk, and how their thoughts and feelings change over time. Adolescence is time of rapid growth and development and teens can be vulnerable to toxins and exposures that could increase their risk for cancer later in life. Generally girls are aware of things they can do to reduce their breast cancer risk. So far, SOFT results show that mothers are the primary information source for their daughters, and the more anxious and worried mothers are, the more likely their daughters will feel the same. Outreach efforts should focus on helping these mothers communicate their status to their daughters.

Dr. Schwartz cautioned parents to think about their adolescent children as individuals with unique needs before deciding what to reveal and when. Because the teenage brain is a work in progress, parents should consider the behaviors that might result from divulging the distressing news. Some teens will not feel stressed at all, while others will have significant worry. The goal for the parent is to “neutralize” negative beliefs. Parents can play a powerful role in shaping their offspring’s reactions.

Finally, Dr. Patrick-Miller gave some practical advice to all the parents and grandparents in the session: “Put your oxygen mask on first.” In other words, taking care of yourself provides you with the best opportunity to take care of and empower your daughters with strategies for healthy adaptation and managing lifestyle and risk reduction. Meeting with a genetic counselor can help you with this. Other tips include:

  • 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 be confusing.
  • Sharing your feelings is OK. It gives your child permission to do the same.
  • 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.

Susan Lilly, MHS, has a professional background as a health researcher and writer.  She joined the FORCE community upon discovering her BRCA2 mutation status after a breast cancer diagnosis in her early 40s. 

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