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Working to Eliminate Disparities in Genetic Counseling and Testing

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Genetic testing can reveal whether or not you have a gene mutation that increases cancer risk. Knowing you’re at higher risk means you can take action to prevent cancer or find it early, when it is easier to treat.

People of all different ancestries are at risk for hereditary cancer. However, fewer people who identify as Black, Latinx, or Asian get genetic counseling and testing compared to non-Hispanic White individuals in the United States. This can lead to cancer disparities—the occurrence of worse health outcomes because of economic, social, cultural, environmental, or geographic disadvantages. Addressing gaps in genetic counseling and testing will help us reduce cancer disparities and improve outcomes for these groups.

What is hereditary cancer?

When cancer risk is passed from one generation to another, it is called hereditary cancer. This happens when one of the genes that protects us against cancer has a mutation. The BRCA1 and BRCA2 genes are examples. People with these mutations have a higher risk for breast, ovarian, prostate, and pancreatic cancers, as well as melanoma.

Experts recommend people with certain personal and family histories of cancer get genetic testing. Genetic counselors help figure out if genetic testing is appropriate. They can also arrange testing.

Do people of different ancestries have the same risks for hereditary cancer?

Yes, in most cases. Studies show most hereditary cancer syndromes occur just as often in all populations, regardless of ancestry. There are a few exceptions, though. Some specific DNA changes related to cancer risk are more common in certain populations.

For instance, certain BRCA mutations are relatively common in people of Ashkenazi Jewish ancestry. In the United States, BRCA1 or BRCA2 mutations occur in 1 in 400 people. In people of Ashkenazi Jewish ancestry, BRCA1 or BRCA2 mutations occur in 1 in 45 people.

What does research tell us about disparities in genetic counseling and testing?

Research has found differences in certain demographic groups when it comes to genetic counseling and genetic testing:

  • Health care providers bring up genetic counseling and testing less often to people who identify as Black, Latinx, or Asian.
  • People who identify as Black, Latinx, or Asian get referred to genetic counseling and testing less often than non-Hispanic White patients.
  • Fewer people who identify as Black, Latinx, or Asian report being aware of genetic counseling and testing for hereditary cancer than non-Hispanic Whites.

How can we reduce genetic counseling disparities?

Patients, health care providers, and public health professionals can work to reduce these disparities in many ways:

  • Know and share family medical history.
    • Talk to your family about types of cancer and other health conditions that have happened in your family. If possible, find out what age your relatives were when they were diagnosed. Share this information with your doctor.
    • Health care providers can ask patients about their family history of cancer and update information on a regular basis. At Huntsman Cancer Institute, we work with primary care providers at University of Utah Health to identify patients at risk for hereditary cancer syndromes based on reported family history.
  • Create easier access to genetic counseling and testing.
    • Many centers now offer genetic counseling by phone, video, or in-person appointments.
    • Many genetic testing laboratories offer low-cost or free genetic testing to people who can’t afford it or who don’t have health insurance.
  • Provide more education about hereditary cancer to the community.
    • Public health professionals can get the word out that people of any ancestry can be at risk for hereditary cancer. By sharing information and resources, we can increase awareness of genetic counseling and testing for hereditary cancer.

What should you do if you are concerned about your personal or family cancer history?

Talk to your doctor about your concerns. Ask for a referral to a genetic counselor if you want to have an in-depth discussion about your family cancer history.

You can also schedule a genetic counseling appointment in the Huntsman Cancer Institute Family Cancer Assessment Clinic without a referral. We offer visits by phone, video, or in person. To make a genetic counseling appointment, call 801-587-9555.

Cancer touches all of us.