Insights into BRCA1/2 Genetic Counseling from Ethnically Diverse Latina Breast Cancer Survivors

Abstract

Despite the disproportionate underuse of genetic counseling and testing for BRCA1/2 (BRCA)-associated hereditary breast and ovarian cancer (HBOC) risk among Latinas, little is known about the associated barriers and facilitators. We conducted in-depth qualitative interviews with 20 at-risk Latina women from diverse backgrounds. Eligible women were diagnosed with breast cancer <50 years, with or without a family history of breast and/or ovarian cancer (>1 first-degree relative diagnosed <50 years). All interviews were conducted in Spanish, audio recorded, transcribed, and translated into English. Two bilingual coders used thematic analyses to identify 7 main themes. Results revealed very low levels of awareness and knowledge about HBOC and BRCA genetic counseling. Interestingly, for most Latinas, competing life demands and cultural concerns (fatalismo and destino) did not strongly influence personal beliefs about genetic counseling. In addition, older women were equally as interested in education, cancer prevention, and BRCA genetic counseling as younger women. These findings suggest that Latinas, regardless of age, increasingly acknowledge and prioritize their own health. Women reported their main motivator to undergo counseling was concern about family members' cancer risks. Main barriers included financial and insurance concerns, and lack of awareness about genetic services. Investigating the beliefs and attitudes of diverse populations of Latinas at risk for HBOC reveals logistical barriers to BRCA genetic counseling uptake within this under-represented community. Efforts are needed to provide at-risk Latina breast cancer survivors' knowledge of and access to genetic counseling and testing based on risk status and Latinas' increasing responsiveness and uptake of these services.

Provider’s Perceptions of Barriers and Facilitators for Latinas to Participate in Genetic Cancer Risk Assessment for Hereditary Breast and Ovarian Cancer

“…Reinforcing findings reported from studies with Latina patients, motivators to participate in GCRA included informing family risk, informing treatment/prevention decisions, and following doctors’ recommendations. Also consistent with prior work was providers’ identification of barriers related to included cost/insurance, suboptimal referrals, awareness, language, education, and stigma [ 20 , 26 , 29 , 43 , 44 , 45 ]. Below we identify where the present study findings expand prior work.…”

“…Evidence from community samples suggest that Latinas may be less likely to receive counseling. In a small study that included 20 at-risk Latina breast cancer survivors recruited from community settings, only 35% had testing and none received counseling [ 44 ]. Future research can examine outcomes among patients with and without genetic counseling and also explore if alternative genetic counseling delivery models, such as streamlined approaches to pre-test genetic education [ 48 ] may yield benefits in terms of reach and efficiency.…”

Lexigene®: An online medical genetics translation tool to facilitate communication

“…These patients are less likely to understand or adhere to care plans and are less satisfied with the care they receive (Gregg & Saha, ; Jacobs, Chen, Karliner, Agger‐Gupta, & Mutha, ). Similar findings have been shown for patients receiving genetic counseling for a variety of indications when counseling is not provided in their preferred language (Cruz‐Correa et al, ; Rajpal, Muñoz, Peshkin, & Graves, ).…”

Racial and ethnic differences in genetic counseling experiences and outcomes in the United States: A systematic review

“…Baseline levels of understanding of the process of genetic counseling are low in the general population despite increased availability of genetic counseling services (Allen, Roberts, & Guan, 2019;Maio, Carrion, Yaremco, & Austin, 2013). In some racial and ethnic communities, the vast majority of people have little or no familiarity with the field of genetic counseling (Awwad, Veach, Bartels, & LeRoy, 2008;Rajpal, Muñoz, Peshkin, & Graves, 2017;Sheppard et al, 2014;Sussner et al, 2014). Racial and ethnic disparities in access to and participation in genetics research, testing, and counseling have been identified (Armstrong, Micco, Carney, Stopfer, & Putt, 2005;Butrick et al, 2015;Levy et al, 2011;Peters, Rose, & Armstrong, 2004;Suther & Kiros, 2009).…”