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Sharing Genetic Testing Results with Family

Read Time: 5 minutes
Wendy Kohlmann, MS, CGC, Kristen Pauley, MS, CGC, Susanna Strydom, MS

Family walking on the beach

Many people with a personal or family history of cancer are now offered genetic testing to explain their cancer history. Whether you test positive or negative for a mutation in a cancer-related gene, it is important to share this information with family members so they can better understand their own cancer risks and management recommendations.

Why are my genetic test results relevant to my family members?

We share approximately 50% of our genetic material with first-degree relatives like parents, siblings, and children, and approximately 25% with second-degree relatives like aunts, uncles, and grandchildren. Your genetic testing results may provide important information for your family members.

Why is it important to share a positive genetic test result?

If you are found to have a cancer-related mutation through genetic testing, your family members are at risk. Family members should be informed so they can talk with a genetic counselor or their health care provider about genetic testing for themselves. If they also carry the mutation, screening and medical management may be recommended to catch cancer at an early stage or to lower their cancer risk.

Why is it important to share a negative genetic test result?

If no mutation is found through your genetic testing, this is also important. Providers will analyze your negative test results and family cancer history to determine if another family member should consider genetic testing. If your negative test result eliminates the need for your relatives to be tested, their cancer risks and screening can be determined by their personal and family history.

Who should I share my results with?

All close relatives should be informed of your genetic testing results. It may be helpful to start with parents, siblings, and adult children and then invite them to share this information with more distant relatives like aunts, uncles, nieces, nephews and cousins. For young children, it may not be necessary to share your results right away or in great detail as many cancer-related mutations do not increase the risk of cancer in childhood.

If you tested positive for a mutation in a gene that does increase the risk of cancer in childhood, like in the genes TP53 or APC, speak with your provider or genetic counselor about communicating these results with your children and the importance of genetic testing.

When should I share my results?

It can be helpful to let family members know you are beginning the genetic testing process so they are aware this information is coming and can decide how they prefer the results be communicated. Whether or not your family members were aware that you were having testing done, you should share your results with them as soon as you feel ready.

In addition to the reasons listed above, this may be important to share because some genetic testing labs offer free testing for a period of time for family members after a mutation is identified Informing your family in a timely manner may allow them to pursue no-cost testing to see if they share the same mutation.

How should I share my results?

Each family has their own unique way of sharing information. Families have shared genetic information in many different ways including emails, social media, letters, phone calls, one on one discussions, and family dinners. Often family members will need certain pieces of information, such as a copy of your test results or a phone number for the clinic.

It can be helpful to think about how to pass those things on when talking a relative in person or by phone or in person. Email or mail might be approaches that are more comfortable for relatives you are not in close contact with. It might be helpful to ask another relative who is in contact with that family member to help you get in touch.

What information is important to share?

You shouldn’t feel responsible for providing every detail of your test result to your family members. That can be a lot to take on. Usually you will be provided with a copy of your test report and a summary letter or note. These can often be helpful ways to inform family members.

If your genetic testing was positive, share this information:

  • Contact information for the genetic testing resources.
  • A copy of your test result.
  • How genetic testing could be helpful for them.

If your genetic testing was negative, share this information:

  • What type of testing you had done.
  • The fact that no mutation was identified.

What should I expect after sharing my results?

While many people are grateful for receiving information that may be important to them and their health, every person is different in how they react to this type of information. There are some common reactions you may expect:

  • Relief
  • Surprise
  • Anxiety
  • Fear
  • Denial or dismissal

While not always easy, try to be patient and understanding of the different ways family members may react to your genetic testing information. The important thing is that you share your results so that they at least have the awareness and option of taking next steps.

Who can help me share these results?

Sharing results isn’t something you need to do alone. Talk with your health care provider or a genetic counselor if you want assistance in communicating this information with family. They can help in a variety of ways.

Who can my family members contact if they are interested in learning more?

Family members who live in the area can schedule an appointment with the Family Cancer Assessment Clinic. We offer visits by phone, video, or in person. To make a genetic counseling appointment, call 801-587-9555.

Family members who live in another area can search for genetic counselors near them through the National Society of Genetic Counselors (NSGC).

Cancer touches all of us.