Tips For Sharing Your Genetic Information

A positive genetic test result, meaning that you are found to have a mutation in one of your genes causing cancer, can be life saving information for family members. Making your relatives aware that there is a genetic mutation in the family allows them to opportunity to see if they too carry the genetic mutation and take steps to reduce their risk. As we know, family dynamics and the complexity of genetic information can make it hard to share genetic information.

Here are a few tips Kintalk has for communicating genetic information:Sharing information

Know what you need to share with your relatives

-Genetic test results (this is the most important piece of information to share)
-Family tree
-Screening recommendations
-Family letter explaining the situation and what it means for them

*To to access templates of family letters for Lynch syndrome click : Dear Family Member 

*To to access templates of family letters for Hereditary Breast and Ovarian Cancer Syndrome click: Dear-Family-Member-HBOC .

-Your genetics professional’s note explaining the results and next steps for you and your family

Ways to communicate the information
You can communicate your genetic information with your family members via: mail, email, telephone or Kintalk.org.  If you don’t have your relatives contact information, you can ask another relative to see if they have it or know another who does. Additionally, social media (ex Facebook) is another great way to find relatives.

Reminder: You don’t have to be an expert to share the information
Genetic information is complex and can be hard to explain. Its important to remember that you don’t have to know all the information. There are experts who can help answer your relatives questions. Online resources can be another option however, it’s important to make sure you are reading credable resources. Just because it’s on the internet does not make it accurate. Information for hospitals websites tend to be correct, like Kintalk.org

Dealing with your emotions and feelings of sharing "Bad News"
Some people don’t share their genetic information because they don’t want to be the bearer of bad news. Please remember that while talking about cancer risk can be an uncomfortable conversation, you are sharing information that may help your relatives prevent or detect cancer at an early and treatable stage. You may just be saving their life by sharing this information.

Talking with children about your genetic test results

Telling your children about what is going on in the family and how it may affect them can very difficult. Dana Farber's  Andrea Patenaude, PhD who is a Cancer Genetics and Prevention Program Psychologist provides some excellent insight on starting this discussion.

http://blog.dana-farber.org/insight/2013/08/tips-for-talking-to-your-children-about-genetic-test-results/

Additionally, the advocacy group FORCE has created a lovely book about how to share your BRCA gene mutation with family members, including children.

Talking About BRCA in Your Family Tree