Family Communication After Genetic Testing for Colorectal Cancer

About the Study

This study is looking at genetic testing in newly-diagnosed colorectal cancer patients and comparing different ways of informing family members learn about inherited cancer risk for relatives of participants who test positive for an inherited mutation. 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 the different approaches to family communication are associated with differences in participants' 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 1-4 colon or rectal cancer.
• Diagnosed within the past 3 months.
• Have not had genetic testing for an inherited mutation 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.
• Must live in the United States.
• Should not had previous genetic testing for inherited cancer risk.
• Must be able to speak and read English or Spanish to complete the required study activities. 

People cannot participate if: 

• Their colorectal cancer was diagnosed more than 3 months before enrollment.
• You have recently had germline genetic testing.
• You do not meet the requirements for participating family members.