Family Communication After Genetic Testing for Colorectal Cancer

About the Study

Some people with colorectal cancer have an inherited genetic change that can increase the risk of colorectal and other cancers. When a person is found to have one of these inherited changes, their close relatives may also have an increased risk and may benefit from genetic testing.

This study is looking at different ways of helping family members learn about their potential inherited cancer risk and access genetic testing.

The study will compare two approaches:

1. The person with colorectal cancer tells their close family members about their genetic test results and encourages them to have genetic testing.
2. A member of the healthcare/research team contacts the family members directly to explain the genetic testing opportunity and help them access testing.

Researchers want to learn which approach is more effective at helping first-degree relatives understand their potential cancer risk and complete genetic testing.

What the Study Involves

The study has two main steps.

Step 1: Genetic testing

• People who have recently been diagnosed with colorectal cancer will provide a blood sample and have genetic testing performed as part of the study.
• If testing identifies an inherited genetic change known or suspected to increase cancer risk, the person and eligible first-degree relatives may move to the second step.

Step 2: Family genetic testing

• Eligible first-degree relatives will be randomly assigned to one of two approaches for receiving information about the patient's genetic test results.

Group A — Patient-mediated communication:
 The person with colorectal cancer communicates the genetic test information to their family members and encourages them to pursue genetic testing.

Group B — Provider-mediated communication:
 A member of the healthcare/research team contacts the family member directly to explain the genetic testing opportunity and help with the process.

Researchers will compare the two approaches to see how they affect genetic testing among family members. The initial patient will be followed for up to three years, while participating family members will be followed for up to one year.

Why Is This Study Important?

When someone has an inherited cancer-risk gene change, their first-degree relatives—such as their parents, siblings, and children—may have a chance of carrying the same change.

However, it can be difficult for patients to explain complicated genetic information to their relatives. Some family members may not understand why genetic testing is important, while others may not know how to arrange testing.

This study is examining whether having a healthcare provider communicate directly with relatives can make it easier for them to understand their potential inherited cancer risk and obtain genetic testing.

What Researchers Hope to Learn

Researchers will study:

• How often inherited cancer-risk gene changes are found among people newly diagnosed with colorectal cancer
• How effectively genetic information is communicated to first-degree relatives
• Whether direct communication from healthcare providers increases genetic testing among relatives
• Whether different groups of patients, including racial/ethnic minority and rural populations, participate in the study
• Whether the different approaches to family communication are associated with differences in the patient's outcomes over time
• Information about social factors that may affect access to genetic testing

People with newly diagnosed colorectal cancer:

• Adults 18 years or older
• Diagnosed with stage I, II, III, or IV colon or rectal cancer
• Diagnosed within approximately the previous 3 months
• Have not had germline genetic testing within the previous 2 years
• Have at least two living first-degree relatives who may be eligible to participate
• Are willing to share information about their cancer diagnosis with those relatives
• Can speak and read English or Spanish
• Do not have a condition that prevents them from understanding genetic test information and communicating it to their family

Family members:

First-degree relatives who participate must:

• Be 18 years or older
• Live in the United States
• Have not previously had germline genetic testing
• Not already have a known hereditary colorectal cancer syndrome
• Be able to speak and read English or Spanish to complete the required study activities

You may not qualify if: 

• Your colorectal cancer was diagnosed more than approximately 3 months before enrollment

• You have recently had germline genetic testing

• You do not meet the requirements for participating family members