Hereditary Cancer Communication with Underserved Patients. G. Joseph, C. Guerra Anthropology, University of California, San Francisco, San Francisco, CA.
While genetic counseling and testing for individuals and families at risk of hereditary breast and ovarian cancer (HBOC) is the standard of care, studies show that medically underserved patients (including people of color, low income and/or low literacy) have less knowledge of and access to cancer genetic counseling and testing, and even where these services are available, uptake is low compared with white, insured populations. Fewer than 13% of all women who receive BRCA testing in the US are of non-European ancestry even though people of color, who are disproportionately low-income, make up 35% of the US population. BRCA testing is now a required insurance benefit as a preventive service under the ACA; however such financial access is essential but not itself sufficient to ensure high quality genetic counseling and testing. Gaps in effective communication (when a message reaches the intended audience and where the meaning is mutually understood) are widely recognized as a major contributor to health disparities. We conducted an in-depth ethnographic study of HBOC counseling and testing at two public hospitals providing these services to their diverse underserved patients. Research included observations and audio recording of over 150 genetic counseling sessions conducted in English, Spanish and Cantonese, follow up interviews with patients and counselors, and focus groups with genetic counselors at NSGC. We identified structural barriers to effective communication, as well as strengths and limitations of counselors communication across language, literacy level and culture. Structural barriers include substantial problems with medical interpretation for limited English speakers. The effectiveness of counselors communication was limited by analogies and technical language that did not translate effectively across literacy level and culture. Counselors strengths included their ability to communicate the essential purpose of the tests and to develop rapport with patients despite some miscommunication. As genetics and genomics become mainstream medicine, these advances can actually exacerbate breast cancer disparities if low-income women are unable to access and benefit from genetic risk services in the same ways as those who are affluent and insured. The unique characteristics of public health settings and the patients they serve must be understood and taken into account in order to reap the benefits of new genetic technologies.
You may contact the first author (during and after the meeting) at