Sharing information with adult relatives

By definition, hereditary cancers affect entire families. Inherited gene mutations can be passed from mothers and fathers to sons and daughters. Blood relatives, even distant relatives, may share the same mutation that runs in a family. Breaking the cycle of hereditary cancer requires two important steps:

1. genetic testing
2. sharing test results with relatives 

Each family member who is tested and shares their results plays a key role in protecting their loved ones from cancer. This cycle of testing-sharing-testing-sharing is known by experts as “cascade testing.”

Communicating with family

It is important for you to exchange medical information—especially genetic test results—with your relatives, so that every family member who may be at high risk can take steps to protect their health. At the same time, sharing this information can be challenging because every person and family situation is different. For example:

• Some people prefer to keep medical information private.
• Family members may have differing personal beliefs about medicine and health.
• Some people prefer to avoid what they perceive as bad news.
• Some family members may be distant or estranged from one another. 
• The ideal timing for sharing information may vary based in individual circumstances.

Preparing to communicate

Planning ahead can help your communication process proceed more smoothly. This includes:

• identifying which relatives need to be contacted.
• assembling a list of important medical records (including genetic test results) and any relevant family health history.
• preparing a list of genetics experts and support resources. 
• gathering factual information about known gene mutations in the family, associated cancer risks and risk management options.
• enlisting relatives to help you communicate with other relatives. 

FORCE's brochure, The Genes Between Us is a step-by-step guide that includes resources for sharing genetic information with relatives. 

If you decide not to communicate with relatives

Although you may have valid reasons for not discussing health information with relatives, or waiting until the timing seems right, there is no perfect time to learn about the risk for cancer, and there is no convenient time to receive a diagnosis of cancer.