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Sharing Genetic Information With Children and Young Adults

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If you test positive for a genetic mutation that increases cancer risk and you have children, there is a 50-50 chance they have inherited it, too. Many people struggle with when and how to deliver this news. What you decide likely will depend on the ages and personalities of your children. They won't be able to have genetic testing until they are 18 or older. Even for those who test positive, no intervention is recommended until they are at least 25. So you do have some time, especially if your children are younger. Very young children (under age 9 or 10) probably aren't ready for the information anyway.

Some general tips you may find helpful include:

  • Think about your child’s age, personality, and maturity level. A child who worries a lot or tends to be overly anxious might not get any benefit from knowing that a gene mutation runs in the family. However, a child who takes things in stride could be just fine with it — especially if he or she is aware that many relatives have had cancer. Age matters, too: a 10-year-old might not be ready, but a 16-year-old could be. Or you might decide it’s better for your kids to wait until they are 18 or at least finished with their education(s). It really depends on the individual.
  • If your kids suspect something is going on, it’s probably best to tell. Children often can sense when there is an issue in the family. Maybe they overhear a phone conversation. Or they know some of their aunts, uncles, or grandparents have had cancer. They might be curious about your doctors’ checkups or why certain members of the family are having surgery (such as preventive mastectomy or ovary removal, for example). In these cases, it’s better to tell the truth, putting it in simple terms they can understand.
  • Make sure you’re ready to talk about it. If you’re very upset about having the mutation in your family or you feel guilty about possibly passing it along to your children, try to work through these feelings first. Your fear, guilt, and/or sadness will come through to them. You might find it helpful to speak with a genetic counselor, a mental health professional, and/or a peer support group of other high-risk women. One good resource is FORCE: Facing Our Risk of Cancer Empowered, which has a support section where you can connect with other high-risk women online, over the phone, or in person.
  • Before you tell, practice what to say. Terms like “genetics,” “heredity,” “mutation,” and even “cancer” are difficult to explain. Make sure you fully understand the genetic mutation that runs in your family and what it means for cancer risk. It can be helpful to think of a mutation as a “misspelling” or “mistake” in a gene that can increase the risk of having a problem in the body. In this case, the problem is the growth of unhealthy cells known as cancer. However you say it, keep it simple and to the point. Ask other family members or your genetic counselor to go over your talking points with you.
  • Be reassuring and upbeat. Knowing that you and the people you love are at risk for cancer can be scary. Try to help your kids understand that having this information can be empowering. Now you know why certain members of the family have developed cancer. As a result, you and other relatives who have the same gene mutation can take steps now to lower your risk. When your kids are adults, they can get tested and find out whether or not they need to do the same thing.
  • After you tell, check up on your kids. Whatever their ages, children could be anxious about their health after they get this news. Pre-teens, teens, and young women are especially vulnerable to worries about breast cancer as their breasts change and mature. Keep the lines of communication open. It might be helpful to have a conversation with your children’s doctor and/or your genetic counselor.
  • Remember that this conversation can take place over time. You can come back to this topic as your children get older and you become more comfortable. So if it doesn’t go perfectly the first time, there will be opportunities to talk again.

The National Society of Genetic Counselors published a booklet, Talking About BRCA in Your Family Tree (PDF), which you may find helpful. Although it talks about BRCA, the advice is relevant to families with any of the other inherited gene mutations that can increase breast cancer risk.

Sometimes there can be disagreements in the family as to whether or not children should be told. This can raise some delicate issues. For example, if you have brothers or sisters who haven’t told their children yet and your kids know, it can get tricky if it comes up in conversation. Also, if you have siblings or other relatives who chose not to have testing, you find yourself worrying about their children in the future.

When children are minors (under 18), it’s best to let their parents decide what is right for them. As those children grow into adulthood, though, talk to their parents about sharing the information about what’s going on in the family. As adults, they might want the option to have testing and, if they are positive, take steps to reduce their risk.

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