Breast Cancer Genetic Testing Awareness, Attitudes and Intentions of Latinas Living along the US-Mexico Border: A Qualitative Study

Abstract

Background Genetic testing for breast cancer may facilitate better-informed decisions regarding cancer prevention, risk reduction, more effective early detection, and better determination of risk for family members. Despite these potential benefits, significant portions of the US population—particularly Latinas—lack awareness of genetic testing for breast cancer susceptibility. Among women who are tested, less than 4% are Latina. To uncover reasons for Latinas’ low participation, this study explores awareness, attitudes and behavioral intentions to undergo genetic testing among average-risk Latinas along the Texas-Mexico border. Methods Eight focus groups were conducted with 58 Latinas aged 19–69 living in Hidalgo County, a largely Latino region of South Texas. Focus group discussions were digitally recorded, transcribed and analyzed using qualitative content analysis to assess, categorize and interpret them. Two experienced study team members analyzed transcripts to identify major concepts grouped into theme categories. Results Participants mostly had less than a high-school education (43%), spoke primarily Spanish (52%), were of Mexican-American origin (90%) and had a family income of $30,000 or less (75%). Focus groups found that most participants had positive attitudes and strong interest in genetic testing, yet lacked general awareness and knowledge about genetic testing, its risks, benefits, and limitations. Participants also identified several key cultural-based influencers, such as family, religious beliefs and fear of testing. Conclusion The delivery of culturally adapted risk information is needed to increase and ensure Latinas’ understanding of breast cancer genetic testing during their decision-making processes. Key Latino values—religiosity, importance of family and the influential role of health care providers in health decisions—should also be considered when designing interventions targeting this specific group. Further research is needed to identify effective ways to communicate genetic risk susceptibility information to Latinas to help them make informed testing decisions.

Communicating PNPLA3 genetic risk status for NAFLD among Mexican-origin men

“…Overall, men in this study supported the use of a mailed letter for communicating genetic risk, supporting prior findings for this method of delivery (30). In addition, the Spanish speaking men highlighted the importance of receiving results in their preferred language, as has been previously reported in studies centered on BRCA1/2 (14,17). Mexican-origin men expressed their interest in having an optional appointment with either a study staff member or a health professional with sufficient knowledge on PNPLA3 and its influence on NAFLD progression.…”

“…While the importance of genetic testing has recently emerged within the context of personalized medicine, there have been limited studies on genetic testing strategies for Mexicanorigin adults and no studies to date specifically for men (13)(14)(15)(16)). However, low levels of knowledge and awareness about genetic testing have previously been reported (16), and prior findings demonstrate that Hispanics may not understand risk within the context of genetics due to limited genetic literacy defined as the ability to obtain, process, understand, and use genetic information (17,18).…”

Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review

“…Culture-specific stigma, shame, and secrecy about intractable illnesses, particularly cancer, can prevent sharing disease-related information in Latinx families (Joseph & Guerra, 2015). Studies of cancer prevention reported that Latinx populations avoided screening because of fatalismo (fatalism), a sense that the disease trajectory was determined by fate, and that little could be done (Chalela et al, 2012;Kinney et al, 2010;Rajpal et al, 2017;Sussner et al, 2013Sussner et al, , 2015.…”

Young Women with Breast Cancer in Resource-Limited Settings: What We Know and What We Need to Do Better

“…Among this group, only 1–4% of women had BRCA testing performed even though most of them declared they would undergo genetic testing within six months if it was offered free of cost. 74 …”