Sharing Genetics with Your Child

If you have a strong family history of a genetic disease such as cancer, you may be considering having your child tested. If your child tests positive for a genetic mutation, it may be difficult for you to process the information, and even harder to share it with your child. Even though it is challenging, an honest discussion with your child can relieve stress in the long run by:

• easing children's fears through open communication
• preparing her for screenings and preventative measures
• insuring that she doesn't form any inaccurate conclusions based on what she overhears about test results from parents and other relatives.

Explaining ancestry to children can also be complicated, even without adding medical information. However, if you keep a few things in mind, you can have an open and productive discussion with your child.

How to Discuss Genetic Test Results With Your Children

You can't discuss genetic test results with your children before you understand them yourself. Here are a few basic facts:

• If your child tests positive for a disease such as cancer, it does not mean that he will actually get the disease. Your child may never get cancer, despite testing positive for a mutation. A positive result simply means that he has a higher risk than other children do. It also means that he'll likely have to start undergoing cancer screenings at a young age.

• If your child tests negative for certain cancers, it does not mean he is immune to the disease. It only means he has the same disease risk as the general population.

Your health care provider or genetic counselor can help you make sense of your results and guide you with a possible treatment plan. Genetic counselors can also help you deal with any strong emotions that may arise.

Explaining Genetics to Children

Genetic testing is a difficult topic to discuss with your child. Prepare yourself mentally before trying to explain genetics, and genetic test results, to your child. Some parents find it helpful to have a friend or partner lend their support before and after the discussion.

Before sitting down with your child to explain genetics, it helps to recognize your own feelings of anger, fear, guilt or sadness. Even if you can't resolve these feelings, acknowledging them and talking with your adult support network will put you in a position to offer the most to your child.

When you are ready to talk with your child:

• Check your facts before your discussion. Write down all the topics you want to cover so that you don't forget anything. Double-check your information with a genetics specialist.

• Take your child's personality and your relationship into account. How emotionally mature is your child? How are his coping skills? How do you usually talk to your child about difficult topics? Use this information to help steer the conversation.

• Use simple and age-appropriate language. Avoid euphemisms, which may lead to confusion. While it may be tempting to reassure your child with an "everything's going to be okay" attitude, resist the temptation. It is fine to remain positive and hopeful, but be careful not to made predictions that could lead to broken promises and shattered trust.

Tell your child what he needs to know, and encourage questions. Some children may be very curious and ask lots of questions, others may respond quietly and not seek further information. If your child has a question that you cannot answer, talk to your healthcare provider to get the accurate information your child needs.

Resources

Cancer.net (2006). Sharing genetic test results with your family. Retrieved December 7, 2008, from the Cancer.net Web site: http://gicancers.asco.org/patient/Learning About Cancer/Genetics/Sharing Genetic Test Results With Your Family.

Friedman, S. (2008). Hereditary cancer: How do I tell my children? Retrieved December 7, 2008, from the FORCE Web site: http://www.facingourrisk.org/newsletter/2008winter/hereditary_cancer.html.