Minority Communities Are Not Receiving Adequate Genetic Testing For Breast & Ovarian Cancer, Study Finds; This Can Be a Life-Saving Resource

Years of research have made it possible for many genes associated with the two diseases to be tested; however, experts found that too many women do not go through genetic testing especially women of color. The results revealed that testing was done in only 34% of patients with ovarian cancer and 25% of patients with breast cancer. Due to the lack of genetic testing, the number of variant-of-unknown-significance (VUS) genes are especially prominent within minority communities.

Dr. Ophira Ginsburg, director of the High-Risk Cancer Genetics Program at NYU Langone Health's Perlmutter Cancer Center, explains that as the gene panels become larger (meaning more genes are tested), more VUS genes are found.

“Here are a set of genes where we know there is clinical actionability there's something you can do with the knowledge to protect your health,” she says. “Then there's all the other genes increasingly on these panels, for which we have limited actionability.”

“As the testing becomes more multi-gene over time, we are seeing unfortunately not a lot more uptake in testing across the board, the whole population is not really benefitting,” she continues.

Related: Genetics & Biologic Differences are Partially to Blame for Higher Breast Cancer Death Rates Among African American Women

While comparing these results, the study found that women of racial minority groups had a significantly higher number of VUS genes compared to white women. Genetics can play a large role in the survival rates among Black women diagnosed with breast cancer, who have significantly lower survival rates compared to white women.

“The existing cancer health disparities, particularly in genetics, is if anything increasing as genetic testing increases in complexity,” Dr. Ginsburg says.

Dr. Ginsburg explained that the overall lack of genetic testing can be attributed partially to a simple lack of referrals from primary care centers. Racial disparities can be attributed to challenges with access and utilization.

“We need more research encouraging studies that recruit individuals from different ethnicities, and we need to do better on public health education encouraging people from diverse backgrounds to discuss cancer history,” she says.

Dr. Anita Johnson explains how we can change racial disparities in cancer care

Genetics in Ovarian & Breast Cancer

Even though breast and ovarian cancer are two separate types of the disease, they do have something in common: the BRCA gene mutation. This type of mutation comes in two different types BRCA1 and BRCA2. These two genes help repair damaged DNA, and are important for ensuring the stability of each cell's genetic material and suppressing tumors. Therefore, if they are damaged or mutated, it can cause DNA to not repair correctly. These are inherited mutations, passed on from your mother or father, which can increase a woman’s risk of breast and ovarian cancer.

Related: The New Information About Beyonce's Dad's Breast Cancer The SurvivorNet Guide to BRCA and Inherited Breast Cancer Risk

“…While about 1.3 percent of women in the general population will develop ovarian cancer sometime during their lives, it is estimated that about 44 percent of women who inherit a harmful BRCA1 mutation, and about 17 percent of women who inherit a harmful BRCA2 mutation, will develop ovarian cancer,” Dr. Rebecca Arend, associate scientist at the University of Alabama, Birmingham, told SurvivorNet in a previous interview.

There are ways to find out whether you have inherited the BRCA gene mutations, and it’s through a variety of tests. In order to learn more, it’s important to consult with their physician.

Dr. Rebecca Arend explains how BRCA gene mutations are linked to breast and ovarian cancer

Why Genetic Testing is Important

Whether it’s before or after you’ve been diagnosed with cancer, it’s crucial to have genetic testing. It’s estimated that 80% of women with ovarian cancer do not get offered a genetic test, and that’s why it’s critical that you be your own advocate and ask for testing if it’s not offered.

This is especially important for those diagnosed with ovarian cancer, because it can answer a lot of questions you may have and offer information about the disease and treatment options. By going through testing, doctors can determine different treatment strategies that will best suit a patient's needs. “This information now is crucially important to understanding what treatments [will] most benefit [patients],” Dr. Jocelyn Chapman, a gynecologic oncologist at UCSF Medical Center, told SurvivorNet in a previous interview.

Related: Ovarian Cancer: Understanding the Different Categories of Genetic Testing- What You Got From Your Parents & What's Changed Since You Were Born

Furthermore, knowing your genetic history can help your family members in the process and let them know if they are at increased risk of breast or ovarian cancer. When it comes to prioritizing your health, information is power and can help not only you, but your loved ones as well.

Dr. Jocelyn Chapman explains why genetic testing is important for those diagnosed with ovarian cancer

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