How to Share Genetic Test Results With Family

Blue background showing DNA sequencing lines
March 30, 2017
Nicole Van Hoey, PharmD

As precision medicine and genome mapping become more common, some people—many with family histories of hereditary cancers—choose to be tested for known cancer-causing gene changes, called mutations. Mutations in genes like BRCA1 identify the potential that a person may develop some cancers, like breast or ovarian cancer, and knowing that the mutation is there can help the cancer care team choose treatments if cancer is ever diagnosed.

It’s important to become knowledgeable about the science and about how ideas, or hypotheses, can eventually develop into treatments for patients. share on twitterIf you have a strong family history of cancer, you may choose to meet with a genetic counselor and have genetic testing to learn about your own cancer risk. When genetic test results are positive, it means that a mutation is present and that your cancer risk is higher. If you receive a negative test result, it means that you do not have a specific gene mutation. Genetic counselors are there to help people understand their test results. However, be aware that the results of these tests also affect your family members.

Before the test

Talking with your family about your cancer history and why you are getting genetic testing beforehand may make sharing test results easier. You may want to bring a family member with you to learn the test results so there is someone who can help share them. You may want to ask your relatives how they would like you to share the results.

When a person who tests positive for a gene mutation first hears the results, he or she may feel grief, anger, anxiety, or depression. A person may also feel guilty about possibly passing the mutation to his or her child. However, a person may also feel relieved to learn why the cancer runs in the family, empowering them to make medical decisions to lower cancer risk.

Sharing test results

Whether your results are positive or negative, it is important to share them with relatives who might also carry the mutations. If your results are positive, sharing those results can help family members identify their own risks sooner. Sharing negative test results may be helpful because then your relatives will know that they do not need testing. You might not know which family members need to know about genetic risks, though, and cancer topics can be hard to discuss.

You should share your genetic information with:

  • Close family, like siblings or parents, preferably in a way in which you are available to answer any questions
  • Children older than 18 years old, so that they can make informed health care decisions
  • Extended family, perhaps through a letter with basic information about possible risks

Young children have different ways of understanding and coping with cancer, which makes sharing possible risks more difficult. Only a few known hereditary cancer syndromes increase the risk of cancer in children.

When you share genetic test results about hereditary cancers, your family members need to know at least these 2 important details to share with their health care providers or genetic counselors:

  • The name of the specific gene or genes where the mutation was found, like BRCA1
  • The specific mutation in the gene, like 187delAG in BRCA1

Emotions and actions

Learning about a cancer risk can be stressful for relatives, especially when it is a surprise. Some family members may be thankful to have new details and be ready to seek counseling on their own. Others may not want to know the results or to be tested. A range of emotions is common:

  • Anxiety
  • Guilt
  • Fear or lack of acceptance

You may relate to these feelings, too. But your role in sharing results is to provide information and suggest counseling without pushing or insisting. They should be given the opportunity to make their own decisions about whether to be tested. With communication and patience, genetic test results can help multiple family members understand their individual risks.