Health Care Disparities in Hereditary Ovarian Cancer: Are We Reaching the Underserved Population?

Abstract

Ovarian cancer is an uncommon but deadly disease. There is no effective screening for the disease, and the majority of women with ovarian cancer present in advanced stage and eventually die from their disease. The majority of families with multiple cases of breast and ovarian cancer are found to carry germline mutations in BRCA1/2. Recent, more sensitive sequencing techniques have shown that nearly 20 % of ovarian cancer is associated with germline mutations in cancer susceptibility genes, with approximately 15 % accounted for by deleterious mutations in BRCA1/2. Women found to have mutations in BRCA1/2 can be empowered to make decisions on reproduction, cancer prevention, or treatment that may either avoid cancer or prolong survival. Though initial studies suggested that African American (AA) women were significantly less likely than White women to have mutations in BRCA1/2, this has been found to be untrue. Despite this revelation, and the clear importance of BRCA1/2 mutation status to appropriate clinical management, AA women still undergo genetic counseling and testing at much lower rates than do comparable White women. This disparity is not explained by factors such as calculated risk of a mutation, insurance coverage, or previous knowledge of the availability of testing. To date, no effective strategies have been identified that can overcome this disparity. Possible approaches include use of patient navigators, online social media, or EMR-based decision support aids. Funders should support research in this area, as it represents an actionable means to decrease the burden of ovarian and breast cancer in AA women.

Cost-effectiveness of Population-Wide Genomic Screening for Hereditary Breast and Ovarian Cancer in the United States

“…10 African American women, for example, have been shown to have similar to higher incidence of BRCA1/2 mutations compared with White women but are comparatively more likely to be diagnosed at a younger age and with later-stage cancer, are less likely to be offered genetic testing, and have lower rates of risk-reducing surgery. 39 , 40 Focused analyses of racial/ethnic subgroups and other underserved populations, such as African American individuals, represent an important follow-up opportunity.…”

Racial health disparities in ovarian cancer: not just black and white

“…AA women are at relatively higher risk of OC because of higher rates of BRCA1 and BRCA2 mutations, as compared to other racial/ethnic populations [ 36 , 37 ]. This represents an interesting evolution in our understanding of BRCA mutations in AA women because early studies on the subject seemed to suggest the opposite; that AA women harbor significantly less BRCA mutations, compared to CA women [ 3 ]. BRCA1 and BRCA2 are tumor suppressors that play a role in repair of damaged DNA.…”

“…According to estimates by the American Cancer Society, 22,440 new OC cases and 14,080 associated deaths will occur in 2017 [ 1 ]. It is a deadly disease with no effective screening [ 3 ]. Approximately 70% of patients with OC are diagnosed at an advanced stage, with associated poor prognosis, even after aggressive and immediate treatments [ 4 ].…”

Predictors of BRCA1/2 genetic testing among Black women with breast cancer: a population‐based study

“…Racial disparities in BRCA1 and BRCA2 genetic testing persist despite clinical availability of testing for mutations over the past 20 years . While rates of genetic testing among women diagnosed with breast cancer appear to be increasing , Black women affected with breast cancer are substantially less likely to undergo BRCA1/2 genetic testing compared to White women with the disease .…”