More Complete Family Histories Needed to Recommend Genetic Testing

ASCO Annual Meeting
June 4, 2012

In 2011, ASCO's Quality Oncology Practice Initiative (QOPI) tested how a patient's family history was collected and whether genetic testing was recommended for patients with breast or colorectal cancers. QOPI is a national program designed to measure the care provided to patients so each doctor's office or treatment center that participates in the program can use that information to improve the cancer care they provide.

Keeping a patient's family history of cancer is important to understand their risk of cancer and learn if they might benefit from genetic counseling or genetic testing. Furthermore, people with family members who have had breast or colorectal cancer tend to have a higher risk of developing the same cancers. Previous studies have shown that many patients do not have full family histories in their medical records and have not been recommended for genetic testing or counseling.

The 213 doctors' offices and treatment centers that participated in this study looked through 10,466 medical records for information on family history and recommendation for genetic counseling or testing. Researchers found that 77% of the patients' medical records included a family history of cancer in their first-degree relatives (parent, sibling, child), and 61% had a history for their second-degree relatives (grandparent, grandchild, aunt or uncle, niece or nephew). However, less than a third of the medical records with a family history included the age at which the family members were diagnosed with cancer.

Researchers also found that genetic counseling or testing was recommended for 22% of all patients. For patients with an increased risk based on family history, genetic counseling or testing was recommended for 52% of those with breast cancer and 26% of those with colorectal cancer. When genetic testing was done at the doctor's office or treatment center, almost 78% of the patients had agreed to have the testing, and about 79% of patients talked with their doctors about the results of testing.

What this means for patients

“An accurate family history and appropriate referral to genetic testing is important for a patient's treatment and follow-up care, as well as for their family members,” said lead author Marie Wood, MD, Professor of Medicine, Director of the Familial Cancer Program and Deputy Director of Hematology/Oncology at University of Vermont in Burlington. To help create your family history, talk with your family about whether any of your relatives have been diagnosed with cancer, including the type of cancer they might have had and the age they were diagnosed. Learning more about the history of cancer in your family can help you better understand your and your family's risk of cancer.

Questions to Ask Your Doctor

  • Do you have my family history of cancer recorded in my file?
  • What information do you need to create my family history?
  • What is my risk of cancer?
  • Should I visit with a genetic counselor or have any genetic testing?
  • If I choose genetic testing, who will help me understand the results?

For More Information

The Genetics of Cancer

Understanding Cancer Risk

Genetic Testing

What to Expect When Meeting With a Genetic Counselor

Sharing Genetic Test Results With Your Family