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BRCA Genetic Counseling Among At-Risk Latinas in New York City: New Beliefs Shape New Generation

  • Original Research
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Journal of Genetic Counseling

Abstract

Despite the life-saving information that genetic counseling can provide for women at hereditary breast and/or ovarian cancer (HBOC) risk, Latinas disproportionately underuse such services. Understanding Latinas’ beliefs and attitudes about BRCA genetic counseling may be the key to better health promotion within this underserved, at-risk group. We conducted 12 focus groups (N = 54) with at-risk Latina women in New York City, followed by 30 in-depth interviews among a subset of the focus group women. Both were professionally transcribed, translated where applicable and data analysis was completed by two coders trained in qualitative methods. Results revealed personal and community knowledge about BRCA genetic counseling was relatively low, although women felt largely positive about counseling. The main motivator to undergo genetic counseling was concerns about learning family members’ cancer status, while the main barrier was competing demands. Generational differences were apparent, with younger women (approximately <55 years) reporting that they were more interested in educating themselves about counseling and other ways to prevent cancer. Younger women were also less likely to ascribe to traditionally Latino-centered cultural beliefs which could serve as barriers (e.g. machismo, fatalismo, destino) to undergoing genetic counseling. Participants were largely enthusiastic about educational efforts to increase awareness of genetic counseling among Latinos. Revealing the beliefs and attitudes of underserved Latinas may help shape culturally appropriate educational materials and promotion programs to increase BRCA genetic counseling uptake within this underrepresented community.

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Acknowledgments

The authors would like to acknowledge the contribution of Elsa Iris Mendez for her assistance in recruitment, as well as the women who participated in the study. This research was supported by 1R03CA139905-01A2 awarded to Dr. Katarina Sussner from NICHD, as well as the National Cancer Institute Training Grant (R25 CA81137).

Conflict of Interest

Author Sussner, Author Edwards, Author Villagra, Author Rodriguez, Author Thompson, Author Jandorf and Author Valdimarsdottir declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.

Animal Studies

No animal studies were carried out by the authors for this article.

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Authors and Affiliations

  1. Department of Oncological Sciences, Division of Cancer Prevention and Control, Icahn School of Medicine at Mount Sinai, New York, NY, USA

    Katarina M. Sussner, Cristina Villagra, M. Carina Rodriguez, Lina Jandorf & Heiddis B. Valdimarsdottir

  2. Center for Community-Engaged Research, Fordham University, New York, NY, USA

    Tiffany Edwards

  3. Karmanos Cancer Institute, Population Studies and Disparities Research, Wayne State University School of Medicine, Detroit, MI, USA

    Hayley S. Thompson

  4. Department of Psychology, Reykjavik University, Reykjavik, Iceland

    Heiddis B. Valdimarsdottir

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  1. Katarina M. Sussner
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  2. Tiffany Edwards
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  3. Cristina Villagra
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  4. M. Carina Rodriguez
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  5. Hayley S. Thompson
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  6. Lina Jandorf
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  7. Heiddis B. Valdimarsdottir
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Correspondence to Katarina M. Sussner.

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Sussner, K.M., Edwards, T., Villagra, C. et al. BRCA Genetic Counseling Among At-Risk Latinas in New York City: New Beliefs Shape New Generation. J Genet Counsel 24, 134–148 (2015). https://doi.org/10.1007/s10897-014-9746-z

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