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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.
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:
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.
Beginning the conversation can be the hardest part. If you’re the one sharing genetic test results, here are some suggestions you can consider:
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.
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:
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.
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?
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.
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 .
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as editors and translators with extensive experience in medical writing.
Ballard LM, Band R, Lucassen AM. Interventions to support patients with sharing genetic test results with at-risk relatives: A synthesis without meta-analysis (SWiM). Nature. 2023; 31:988-1002. Available at https://www.nature.com/articles/s41431-023-01400-1.
Centers for Disease Control and Prevention (CDC). Let’s talk: Sharing info about your family cancer risk. 2024. Accessed at https://www.cdc.gov/cancer/risk-factors/family-health-history.html on October 10, 2024.
Facing Hereditary Cancer Empowered (FORCE). Sharing information with adult relatives. 2020. Accessed at https://www.facingourrisk.org/info/hereditary-cancer-and-genetic-testing/sharing-with-family/sharing-genetic-information-with-adult on October 10, 2024.
Facing Hereditary Cancer Empowered (FORCE). Sharing information about hereditary cancer with children. 2020. Accessed at https://www.facingourrisk.org/info/hereditary-cancer-and-genetic-testing/sharing-with-family/sharing-genetic-information-with-children on October 10, 2024.
Finn KS, Pacyna J, Tsou CA, Smadder NJ, Sharp R. Patient-reported anticipated barriers and benefits to sharing cancer genetic risk information with family members. European Journal of Human Genetics. 2021; 30:53-61. Available at https://www.nature.com/articles/s41431-021-00890-1.
Hodan R et al. Family communication of cancer genetic test results in an ethnically diverse population: a qualitative exploration of more than 200 patients. Journal of Community Genetics. 2024; 15:363-374.
Hunter JE et al. Most people share genetic test results with relatives even if findings are normal: Family communication in a diverse population. Genetics in Medicine. 2023; 25:100923. Available at https://pubmed.ncbi.nlm.nih.gov/37421176/.
National Society of Genetic Counselors (NSGC). How can genetic counselors help me understand results from genetic testing? Accessed at https://www.aboutgeneticcounselors.com/Who-Are-Genetic-Counselors/How-Can-Genetic-Counselors-Help-Me-Understand-Test-Results on October 10, 2024.
Ofverholm A, Karlsson P, Rosen A. The experience of receiving a letter from a cancer genetics clinic about risk for hereditary cancer. European Journal of Human Genetics. 2024; 32:539-544. Available at https://www.nature.com/articles/s41431-024-01551-9.
Wynn J et al. Do research participants share genomic screening results with family members? J Genet Couns. 2022; 31(2):447-458. Available at https://onlinelibrary.wiley.com/doi/10.1002/jgc4.1511.
Last Revised: October 28, 2024
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