Genetic Testing Across Young Hispanic and Non-Hispanic White Breast Cancer Survivors: Facilitators, Barriers, and Awareness of the Genetic Information Nondiscrimination Act

Abstract

This study compared facilitators and barriers to genetic testing and determined awareness about the Genetic Information Nondiscrimination Act (GINA) across young Hispanic and non-Hispanic white (NHW) breast cancer (BC) survivors. Materials and Methods: Women diagnosed with BC of age £50 years in 2009-2012 were recruited through the Florida State Cancer Registry to complete a questionnaire. Results: There were 1182 participants of which 61% (174/285) of Hispanic patients, and 65% (580/897) of NHW patients had BC testing. Among untested participants, the most common barriers were lack of testing recommendation (44% Hispanics, 32% NHW; p = 0.02) and cost-related concerns (41% Hispanics, 40% NHW; p = 0.83). Among tested participants, the top facilitators were as follows: (1) ''To benefit my family's future'' (70% Hispanic, 68% NHW), (2) ''My doctor recommended testing'' (60% Hispanic, 54% NHW), and (3) ''Minimal cost to me'' (59% Hispanic, 72% NHW). Only 27% of tested and 15% of untested women were aware of GINA; misuse of test results was reported as a barrier for only 6.5%. Conclusions: Rates of genetic testing recommendation are lower among Hispanics, but both groups reported additional barriers. Most are unaware of GINA, yet misuse is not a highly cited barrier. Findings suggest the need to educate providers on the importance of recommending testing to all who meet criteria; increase awareness of newer options for more affordable testing; and bolster facilitators that may increase testing uptake.

Culturally Targeted Video Improves Psychosocial Outcomes in Latina Women at Risk of Hereditary Breast and Ovarian Cancer

“…Results from this study also highlight the potential of the video to target historically identified barriers that Latinas in the U.S face for reception of GCT, including language barriers and suboptimal referrals [16,21,47,69]. Few education materials are available in Spanish, and very few genetic counselors speak Spanish in the US [70,71].…”

“…At-risk Latina women are significantly less likely to use GCT services compared to NHWs [16,17,18]. Increasing awareness about GCT and HBOC risk is a logical first step in closing this gap.…”

“…This culturally targeted narrative video constitutes one of the few psychoeducational interventions about HBOC targeted to at-risk Latina women. Our video contributes to and expands prior interventions for at-risk Latinas such as flip charts, or presentations that had only been piloted in small focus groups [13,16]. We piloted the video in an underrepresented sample of 40 Latina immigrants and assessed a novel and comprehensive list of psychosocial outcomes, including constructs such as ambivalence and anticipatory emotions.…”

“…Among Latinas in the U.S., the population prevalence of BRCA1/2 mutations is at least double that of the general population. [14] Despite their high mutation prevalence, Latinas are significantly less likely to participate in genetic counseling and testing (GCT) compared to NHW [15,16,17,18]. Underuse of GCT limits Latinas’ access to information that can inform their risk management and treatment choices, thereby improving their health outcomes [15].…”

Landscape of Germline Mutations in DNA Repair Genes for Breast Cancer in Latin America: Opportunities for PARP-Like Inhibitors and Immunotherapy

“…Breast cancer is the leading cause of cancer death in women worldwide, with about 627,000 deaths in 2018 [1]. About 5–10% of all breast cancer is caused by germline variants in BRCA1/2 [2,3]. Moreover, about 50% of hereditary breast cancer (HBC) cases present germline mutations in BRCA genes [2].…”