Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City
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ORIGINAL RESEARCH
Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City Katarina M. Sussner & Lina Jandorf & Hayley S. Thompson & Heiddis B. Valdimarsdottir
Received: 26 August 2009 / Accepted: 20 January 2010 / Published online: 12 February 2010 # National Society of Genetic Counselors, Inc. 2010
Abstract Background: Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/ or ovarian cancer risk compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased risk of inherited breast cancer. Methods: A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use in future studies. Phase 1 included quantitative telephone interviews (N =15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of participants (N=10) in Phase 2 focus groups. Results: Despite barriers, including lack of K. M. Sussner (*) : L. Jandorf : H. B. Valdimarsdottir Department of Oncological Sciences, Division of Cancer Prevention and Control, Mount Sinai School of Medicine, One Gustave L. Levy Place, 1425 Madison Ave, Box 1130, New York, NY 10029, USA e-mail: [email protected] H. S. Thompson Albert Einstein College of Medicine & Cancer Center Department of Epidemiology and Population Science Division of Community Collaboration and Implementation Science, New York, NY, USA H. B. Valdimarsdottir School of Health and Education, Reykjavik University, Reykjavik, Iceland H. B. Valdimarsdottir Department of Psychology, University of Iceland, Reykjavik, Iceland
awareness/knowledge, concerns related to learning cancer risks of family members, and concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p=0.04). Conclusion: There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness of these approaches should be tested in future research with larger samples. Keywords Genetic counseling . BRCA . Breast cancer risk . Latinas/Hispanic women . Cancer genetic services . Access to genetic services . Beliefs . Cross-cultural education . Knowledge
Introduction Hereditary Breast and Ovarian Cancer (HBOC) and BRCA Genetic Counseling Hereditary forms of breast and ovarian cancer (HBOC), associated with germline mutations in BRCA1 and BRCA2 genes, account for 5–10% of all breast cancers and 10% of all ova
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