If you have questions about how to talk to your children about genetic testing, make an appointment with Cancer Genetics and Prevention Program psychologist, Andrea Patenaude, PhD, at 617-632-5577.
Q. How do I talk to my children about my genetic test result?
A: Many parents tested for hereditary cancer predisposition genes worry about how and when to talk to their children about their test results. There are no hard and fast rules, and parents know their children better than anyone, but here are some suggestions based on decades of experience and studies of communication within families about genetic test results.
- Allow yourself time to adjust to the news so that you can talk to your children calmly and clearly. If you get upset while talking to your children, it is likely to frighten them.
- Think about whether you want to tell all of your children together or speak with them individually. This will depend on your children's ages and maturity differences, how each child likes to receive information, how much each child already knows about cancer in the family and genetics, and the relationships between the children , for example, whether they would prefer having siblings present or not.
- Decide whether you want to talk to your children alone or with your spouse. Sometimes parents plan to talk together to their children, but a child asks a question or the topic comes up and one parent ends up disclosing the result. You might want to consider how to handle a spontaneous request or when you think a good moment would be to talk with your children.
- Think about using simple language to describe the test so that your child can better understand the details.
Example: "The doctors tested my blood to see if there was something in it that might mean it is more likely that someday I might get cancer. What they found is..."
- Make sure to emphasize that this result doesn't mean you have cancer or will necessarily get cancer in the future. However, if you have already had cancer, it may explain why you developed cancer or why others in the family had cancer.
Example: "This test result doesn't mean I will get cancer in the future, but it does help me to plan some ways to better take care of my health going forward. "
- Be sure to ask your children if they have questions. You might ask them to repeat what you told them and that could reveal any misconceptions they might have. Also, let them know that you are always available to talk about this if they have questions later.
Q: Why do parents tell their children about their genetic test results?
- It ensures that parents get to tell their children about it first, so they don't learn about cancer in the family or test results by overhearing conversations with others.
- It starts the conversation in an honest, open way about hereditary cancer.
- It enables parents to emphasize the positives; for example, test results provide information so that we can take early steps to prevent or treat cancer.
- It helps children understand things going on at home and plans parents are making.
- It gives parents a chance to find out what their children are thinking about the cancer in their family and enables parents to answer children's questions.
Q: Do most people tell their children about their genetic test results?
A: We have been surprised to learn from research on families dealing with hereditary breast/ovarian cancer that many parents tell their children about their genetic test result, even quite young children, and often these conversations take place soon after the testing occurs.
- About half of parents tell their children the result within a month of disclosure.
- Girls are told more often than boys.
- Parents typically tell all of their children or none of them. This seems related to the usual level of openness parents have with their children.
- Teenagers are told more often than younger children.
Parents consider these factors when deciding whether or not to share their test results: age, maturity, the emotional state of their child, and the parent's sense of the child's interest in genetic information.
Q: What if I don't want to tell my children about my results now?
A: That is fine. You may feel your children are too young or that there are too many other things going on in the family to add this discussion to the mix now. You may want to think about a better time to consider talking to your child, for example, when they reach a particular age or after a certain event, like a graduation. This seems to alleviate parents' worries about having what sometimes feels like a "secret." You can always reconsider your plan later and pick a different time to talk with your children.