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Cancer genetic counseling communication with low-income Chinese immigrants

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Abstract

As genetics and genomics become part of mainstream medicine, these advances have the potential to either reduce or exacerbate health disparities. Relatively, little research has explored the quality of genetic counseling communication experienced by limited English proficiency patients, especially Chinese Americans. We observed and audio recorded genetic counseling appointments (n = 40) of low-income, limited English-proficient Chinese patients (n = 25) and conducted post-visit interviews (n = 17) using stimulated recall to examine patient understanding of the communication. Standard techniques based in grounded theory, including iterative data review and multiple coders, were used to analyze observation fieldnotes and interview transcripts and to identify these themes: (1) strong beliefs in environmental causes of cancer and skepticism about genetic causes, (2) willingness to undergo genetic testing despite skepticism of hereditary cause of cancer, (3) misunderstanding of key information needed to make informed decisions about testing and screening/prevention options, (4) variable quality of medical interpretation, and (5) selective family communication about cancer and genetic counseling and testing. Together, these themes describe substantial gaps in communication and identify the need for genetic counseling techniques and skills that enable counselors to communicate more effectively across language, literacy, and culture. Understanding the mechanisms of inheritance and the implications of genetic test results can be challenging for anyone, and it is exceptionally daunting for those who have limited English proficiency and/or low literacy. For Chinese immigrant patients to reap the full benefits of genetic counseling and testing, effective communication is essential. Research on interventions to improve communication is needed to ensure that disparities do not widen as genomic medicine reaches a more diverse population.

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Acknowledgments

We are grateful to the patients who participated in this study and especially indebted to the brave genetic counselors who allowed us to observe them in their daily practice. The authors would also like to thank Icarus Tsang for his assistance in data collection.

Funding

This study was funded by Susan G. Komen for the Cure grant no. IIR12221854.

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Authors and Affiliations

  1. Department of Anthropology, History & Social Medicine, University of California, San Francisco, CA, USA

    Janice Ka Yan Cheng & Galen Joseph

  2. Department of Psychiatry, University of California, San Francisco, CA, USA

    Janice Ka Yan Cheng

  3. Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, CA, USA

    Claudia Guerra, Rena J. Pasick & Galen Joseph

  4. Department of General Internal Medicine, University of California, San Francisco, CA, USA

    Claudia Guerra & Rena J. Pasick

  5. Department of Medicine, University of California, San Francisco, CA, USA

    Dean Schillinger & Judith Luce

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  1. Janice Ka Yan Cheng
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Correspondence to Galen Joseph.

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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.

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Cheng, J.K.Y., Guerra, C., Pasick, R. et al. Cancer genetic counseling communication with low-income Chinese immigrants. J Community Genet 9, 263–276 (2018). https://doi.org/10.1007/s12687-017-0350-4

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