Talking with Family Members About Genetic Testing

If you’ve had genetic testing, you might choose to share the results with your family members. If a family member has had genetic testing, you may be interested in knowing their results.

Why sharing results can be important

When you share your genetic test results with your family, the conversation gives them a chance to understand what you are going through. It might also offer information that family members can use to learn about their own cancer risk. Here’s why this information can be important:

• First-degree biological (blood) relatives (mother, father, sibling, child) of the person that tests positive have a 50% chance of having the same gene mutation. 
• Second-degree biological relatives (aunt, uncle, grandparent, grandchild, niece, nephew, or half-sibling) of the person that tests positive have a 25% chance of having the same gene mutation.
• Family members can take steps to reduce their cancer risk or to find cancer early.
• Knowing the family history and genetic testing results helps people talk to their health care team and make informed decisions about their care.

How do I talk to family members about genetic test results?

When a person gets genetic test results from their genetic counselor, it’s important that they learn as much as possible about the results before sharing them with others. In addition to other learning resources, the counselor can provide a family letter that includes the specific gene mutation, the name of the family cancer syndrome and other helpful resources. The letter can be very helpful in planning a conversation with family members. It can even be sent to family members or used along with having a conversation.

People can talk with family about genetic testing and test results in many ways, such as a phone call, face-to-face conversation, text, email, or letter. Some people may come up with valid reasons for not sharing results with family because the time isn’t quite right. But there really is no best time for everyone and every family.

Starting the conversation

Beginning the conversation can be the hardest part. If you’re the one sharing genetic test results, here are some suggestions you can consider:

• I recently had genetic testing. Would you be interested in hearing about it?
• I’d like to tell you about my genetic test results. I think my results could help you too.
• I learned some information that might be important for you to know, too. Can I tell you about it?
• After my cancer diagnosis, my doctor had me meet with a genetic counselor. They helped me understand that my cancer risk was higher  because I have a gene mutation. They told me my close relatives could have the same gene mutation. Can I give you some information so you can talk to your doctor about it?
• I am going to send you an email that has my recent genetic test results. I want you to have this information so you can decide if genetic testing might be something you could benefit from having. Your doctor can help you decide.  

If you’re afraid or nervous to talk to family members

It can be stressful to talk with anyone about a health problem or test result. You may feel nervous  sharing personal health information with family members, even if they could benefit from hearing it. If you want to share your genetic testing results with your family, here are some tips to help you feel more comfortable and get started.

1. Make a list of who you want to share your genetic test results with.
2. Decide how you will share the information: in person, or by phone, email, text or letter.
3. Pick a date and write it on your calendar. Consider choosing an upcoming family get together or sending your family member an email or text in advance.
4. Write down what you are going to say ahead of time or practice with a friend.
5. Your doctor or genetic counselor can give you advice on how to explain your results, since they know your situation best. 

Prepare for possible reactions

It’s important to understand and address your own feelings before talking to your family members. It’s also important to be aware that your family members might feel differently. It’s hard to know how family may react to the news. It’s common for people to feel a range of emotions when learning about a positive genetic test result or family cancer syndrome – whether it’s a family member who was tested or if they were tested themselves. You and your family members may feel:

• Angry or scared about what it means to be at increased risk for cancer
• Guilty for possibly passing an inherited gene mutation on to a child
• Empowered or relieved to have the information they can do something about

Your doctor or genetic counselor may be able to share experiences they’ve had with past family conversations. These might help you anticipate how your family members may react, so you feel better prepared.

Sharing results with children

It’s natural to want to protect children from bad news or information that could feel scary. But kids generally want to be informed and included. Your genetic counselor, doctor, or a pediatrician can help you find resources to guide you through these discussions, including books and online resources based on the child’s age.

You might wonder if it’s a good idea to have children go through genetic testing, or to wait until they are adults to decide themselves whether to have it. It’s important to know that most cancer-related gene mutations affect the risk for cancers in adulthood rather than childhood cancers. However, there are family cancer syndromes that do affect children, and it could be helpful for them to be tested in childhood. Your doctor and genetic counselor can help you and your family decide.

To learn more, see What Should I Know Before Getting Genetic Testing?

Questions to Answer Before Talking to Family Members

If you are sharing your own test results, here are some questions to think about. Addressing these first can help conversations go more smoothly. These questions can be helpful if you’re waiting to hear someone else’s results, too.

• Do I have all the information I need? What specific information am I going to share?
• Who is at risk in my family? Are there certain family members to reach out to?
• What information am I comfortable sharing in person? What information would I prefer to share by letter or email or text?
• How do my family members like to be communicated with? Would they prefer a chat over coffee or an email?
• How  am I feeling about sharing this information?  Would it be helpful if I talked to someone else before talking to family or helpful to talk to one family member before others?
• Are there any family or cultural beliefs I need to consider before telling my family?
• What emotions might my family member(s) feel when I tell them about this?
• Do I have good resources handy to share with my family members?
• Would it be helpful to have my genetic counselor write a family letter for me that includes the details of my test results?

Remember…

• You don’t have to be an expert to have this conversation.
• Your doctor or counselor may recommend that family members be tested for the same genetic mutation that you have, but they will need to decide that themselves. A family letter that includes detailed information could be a very helpful resource.
•  Encourage your family members to talk to someone about testing. Their own doctor or genetic counselor can help them decide if genetic testing is right for them.
• This may feel hard. Being brave for your family members could help them understand their risk, take steps to stay on top of their health, and even prevent cancer or detect it early.
• Help your family member be accountable. Ask them if it would be ok to check back with them in a few weeks to see if they have questions or need help taking the next step.

Finding a genetic counselor

 It’s important to find out how useful genetic testing might be for you before you decide to do it. Talk to your doctor first and ask where you can connect with a genetic counselor or if they recommend one for you.  Genetic counselors specialize in cancer risk assessment and genetic testing. Talking with a trained specialist will help you know what to expect. If you decide to make an appointment with a genetic counselor, they can tell you about the risks and benefits of the best tests for you. They can also explain what the results might mean, and what your options are. 

You can find a list of certified genetic counselors at the National Society of Genetic Counselors.