By Lyndsay Anderson, MSN, FNP-BC, Sara Gómez-Trillos, BA, Vanessa B. Sheppard, PhD, Kristi Graves, PhD, Claudia Campos, MA, Nathaly Gonzalez, and Alejandra Hurtado-de-Mendoza, PhD
Breast cancer is the most commonly diagnosed cancer and the leading cause of cancer death in Latina women. Compared to all patients with breast cancer, Latinas are the second most common ethnic group to carry BRCA1 deleterious mutations, after Ashkenazi Jewish women. However, Latinas are less likely to receive genetic counseling education, referrals, and testing services and have the least awareness of genetic testing compared to non-Hispanic whites and other minority populations. Research indicates that despite their low awareness, Latinas have high interest in participating in genetic counseling and testing.
Barriers to Counseling and Testing
Research suggests that healthcare providers often lack understanding that Latino families may be at elevated risk for hereditary breast and ovarian cancers (HBOC). Furthermore, providers may be unfamiliar with existing financial assistance programs to pay for genetic testing or may not routinely follow national guidelines to refer patients for genetic counseling prior to genetic testing. Risk-reduction and management recommendations for patients with HBOC, such as more frequent radiology screening, clinical exams, and risk-reducing surgery, may present additional financial barriers.
Educating the Workforce
Trained patient navigators and community health educators can foster connections between high-risk Latinas and genetic counseling and testing services. Additionally, training interpreters about HBOC is important to increasing the accuracy of interpretation during genetic counseling.
Diversifying the workforce to increase the number of Spanish-speaking counselors is also important, as is offering alternatives such as telephone genetic counseling with Spanish-speaking counselors.
One innovative approach is ARBOLES Familiares, a training program that provides in-person and online training about genetics, genetic counseling and testing, and making referrals for Latinas at high risk for HBOC. The training is intended for bilingual community health workers and navigators who work with Latin communities in the United States and abroad. Trainees learn to identify individuals at risk as well as specific oncology and genetic service providers in their area to which they can refer patients for further screening.
Genetic counseling may be a key factor in addressing common barriers that Latinas face regarding genetic testing. Oncology nurses serve a critical role in identifying patients at risk for hereditary cancer syndromes and can initiate HBOC risk screening based on family and personal health history; facilitate timely referrals; assist with obtaining culturally sensitive, Spanish-language health information; and help patients navigate low-cost counseling and testing alternatives.