Certain genetic conditions, such as Lynch syndrome, significantly increase your risk of developing some forms of cancer. Learning you have one of these conditions can be emotionally challenging, and deciding when and how to tell your relatives can add an additional layer of worry. Katherine Schneider, MPH, LGC, a senior genetic counselor in Dana-Farber’s Center for Cancer Genetics and Prevention, says there are several factors to consider when sharing this news.
Who Should I Tell?
Once you have given yourself time to adjust to the news of your genetic condition, consider which family members to tell. If you have Lynch syndrome, your parents, brothers, sisters, and children have a 50 percent risk of having it too, while grandparents, grandchildren, aunts, uncles, nieces, and nephews have a 25 percent risk. First cousins, great-aunts, and great-uncles may also be at risk.
Sharing this news with relatives you have lost touch with can be challenging, says Schneider, and may not always be possible. She recommends looking for estranged relatives on social media, or asking other relatives for help getting in touch.
How Should I Share the News?
You may choose to tell your relatives in person, over the phone, in a letter or email, or even through social media. Some people choose to create a “family newsletter” or call a family meeting to share the information. Remember that although holidays and family gatherings may bring the whole family together, they can also be busy times, and the discussion may draw the family’s focus away from the main event, says Schneider. When preparing to tell children, remember to take into account their ages, maturity levels, and emotional well-being, and make sure you and your partner are in agreement about how and when to broach the subject.
What Should I Say?
Schneider suggests sharing the name of the syndrome and the name of the gene. For example: “Our family has Lynch syndrome. It is caused by an alteration in the [name of the gene]. The name of the alteration in our family is [specific DNA change].” You may want to tell your family about genetic testing or encourage them to bring it up with their doctors. It’s also important to let your relatives know that while there is a chance they have the genetic condition, there is also a chance that they do not, and not everyone with the condition will get cancer.
You do not need to be an expert in your genetic condition to talk about it with your family, and it is not your fault if relatives choose not to have testing. “I’ve observed that, over time, almost all of a person’s relatives are very grateful to have this information,” Schneider notes. Although it can be difficult to be the messenger, when you share information about your genetic condition you are empowering your relatives to take care of their health.