Journal of Community Genetics

, Volume 9, Issue 3, pp 263–276 | Cite as

Cancer genetic counseling communication with low-income Chinese immigrants

  • Janice Ka Yan Cheng
  • Claudia Guerra
  • Rena J. Pasick
  • Dean Schillinger
  • Judith Luce
  • Galen Joseph
Original Article


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.


Genetic counseling Health literacy Limited English proficiency Communication Hereditary cancer Health disparities Precision medicine Genomic medicine 



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 information

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

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Human subjects

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.


  1. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association (1999) Health literacy: report of the council on scientific affairs. JAMA J Am Med Assoc 281(6):552–557. CrossRefGoogle Scholar
  2. Andrus MR, Roth MT (2002) Health literacy: a review. Pharmacother J Hum Pharmacol Drug Ther 22(3):282–302. CrossRefGoogle Scholar
  3. Armstrong K, Micco E, Carney A, Stopfer J, Putt M (2005) Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. Jama 293(14):1729–1736Google Scholar
  4. Atkinson P, Hammersley M (1994) Ethnography and participant observation. Sage Publications, Inc, Thousand OaksGoogle Scholar
  5. Barlow-Stewart K, Yeo SS, Meiser B, Goldstein D, Tucker K, Eisenbruch M (2006) Toward cultural competence in cancer genetic counseling and genetics education: lessons learned from Chinese-Australians. Genet Med 8(1):24–32. CrossRefPubMedGoogle Scholar
  6. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K (2011) Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 155(2):97–107. CrossRefPubMedGoogle Scholar
  7. Bernard H (2006) Research methods in anthropology: qualitative and quantitative approaches. AltaMira Press, LanhamGoogle Scholar
  8. Brega A, Barnard J, Mabachi N, DeWalt D, Brach C, Cifuentes M, Albright K, West D (2015) AHRQ health literacy universal precautions toolkit, second edition. (Prepared by Colorado Health Outcomes Program, University of Colorado Anschutz Medical Campus under Contract No. HHSA290200710008, TO#10.) AHRQ Publication No. 15-0023-EF. Agency for Healthcare Research and Quality, RockvilleGoogle Scholar
  9. Butrick M, Kelly S, Peshkin BN, Luta G, Nusbaum R, Hooker GW, Graves K, Feeley L, Isaacs C, Valdimarsdottir HB, Jandorf L, DeMarco T, Wood M, McKinnon W, Garber J, McCormick SR, Schwartz MD (2015) Disparities in uptake of BRCA1/2 genetic testing in a randomized trial of telephone counseling. Genet Med 17(6):467–475. CrossRefPubMedGoogle Scholar
  10. Cheng H, Sit JWH, Twinn SF, Cheng KKF, Thorne S (2013) Coping with breast cancer survivorship in Chinese women: the role of fatalism or fatalistic voluntarism. Cancer Nurs 36(3):236–244. CrossRefPubMedGoogle Scholar
  11. Cheung EL, Olson AD, Yu TM et al (2010) Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiol Biomark Prev 19(9):2211–2219. CrossRefGoogle Scholar
  12. Colby S, Ortman J (2015) Projections of the size and composition of the U.S. population: 2014 to 2060. U.S. Census BureauGoogle Scholar
  13. Coleman C (2011) Teaching health care professionals about health literacy: A review of the literature. Nursing Outlook 59(2):70–78Google Scholar
  14. Cragun D, Bonner D, Kim J, Akbari MR, Narod SA, Gomez-Fuego A, Garcia JD, Vadaparampil ST, Pal T (2015) Factors associated with genetic counseling and BRCA testing in a population-based sample of young black women with breast cancer. Breast Cancer Res Treat 151(1):169–176. CrossRefPubMedPubMedCentralGoogle Scholar
  15. Deimling GT, Wagner LJ, Bowman KF, Sterns S, Kercher K, Kahana B (2006) Coping among older-adult, long-term cancer survivors. Psychooncology 15(2):143–159. CrossRefPubMedGoogle Scholar
  16. Denzin N, Lincoln Y (1998) In: strategies of qualitative inquiry. Sage Publications, Thousand Oaks, pp 110–136Google Scholar
  17. DeWalt DA, Broucksou KA, Hawk V, Brach C, Hink A, Rudd R, Callahan L (2011) Developing and testing the health literacy universal precautions toolkit. Nurs Outlook 59(2):85–94. CrossRefPubMedPubMedCentralGoogle Scholar
  18. Eisenbruch M, Yeo SS, Meiser B, Goldstein D, Tucker K, Barlow-Stewart K (2004) Optimising clinical practice in cancer genetics with cultural competence: lessons to be learned from ethnographic research with Chinese-Australians. Soc Sci Med 59(2):235–248. CrossRefPubMedGoogle Scholar
  19. Emerson R, Fretz R, Shaw L (1995) Writing ethnographic fieldnotes. University of Chicago Press, Chicago. CrossRefGoogle Scholar
  20. Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM (2007) Measuring numeracy without a math test: development of the subjective numeracy scale. Med Decis Mak 27(5):672–680. CrossRefGoogle Scholar
  21. Fagerlin A, Zikmund-Fisher BJ, Ubel PA (2011) Helping patients decide: Ten steps to better risk communication. J Natl Cancer Inst 103(19):1436–1443.
  22. Fehniger J, Lin F, Beattie MS, Joseph G, Kaplan C (2013) Family communication of BRCA1/2 results and family uptake of BRCA1/2 testing in a diverse population of BRCA1/2 carriers. J Genet Couns 22(5):603–612. CrossRefPubMedGoogle Scholar
  23. Fernandez A, Schillinger D, Warton EM, Adler N, Moffet HH, Schenker Y, Salgado MV, Ahmed A, Karter AJ (2011) Language barriers, physician-patient language concordance, and glycemic control among insured Latinos with diabetes: the Diabetes Study of Northern California (DISTANCE). J Gen Intern Med 26(2):170–176. CrossRefPubMedGoogle Scholar
  24. Gaber RS, Thekkekara RJ, Gil DN, Holden CM, Aluen Metzner I, Marcus E, Ganschow PS (2016) Uptake of genetic testing for BRCA mutations in a medically underserved population. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8–12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res;76(4 Suppl):Abstract nr P6–12-09Google Scholar
  25. Glaser BG, Strauss AL (1967) The discovery of grounded theory: strategies for qualitative research. Aldine Pub. Co, ChicagoGoogle Scholar
  26. Glenn BA, Chawla N, Bastani R (2012) Barriers to genetic testing for breast cancer risk among ethnic minority women: an exploratory study. Surgery 8:267–273Google Scholar
  27. Gryn T, Gambino C (2012) The foreign born from Asia: 2011. US Census BureauGoogle Scholar
  28. Johnson A, Sackett R (1998) Direct systematic observation of behavior. In: Handbook of methods in cultural anthropology. Altamira Press, Walnut Creek, p 301–331Google Scholar
  29. Joseph G, Guerra C (2015) To worry or not to worry: breast cancer genetic counseling communication with low-income Latina immigrants. J Community Genet 6(1):63–76. CrossRefPubMedGoogle Scholar
  30. Joseph G, Beattie MS, Lee R, Braithwaite D, Wilcox C, Metrikin M, Lamvik K, Luce J (2010) Pre-counseling education for low literacy women at risk of Hereditary Breast and Ovarian Cancer (HBOC): patient experiences using the Cancer Risk Education Intervention Tool (CREdIT). J Genet Couns 19(5):447–462. CrossRefPubMedPubMedCentralGoogle Scholar
  31. Joseph G, Pasick RJ, Schillinger D, Luce J, Guerra C, Cheng JKY (2017) Information mismatch: cancer risk counseling with diverse underserved patients. J Genet Couns:1-15Google Scholar
  32. Karmara D, Weil J, Youngblom J, Guerra C, Joseph G (2017) Cancer counseling of low-income limited English proficient Latina women using medical interpreters: implications for shared decision-making. J Genet Couns:1–14Google Scholar
  33. Kim YC, Zhao L, Zhang H, Huang Y, Cui J, Xiao F, Downs B, Wang SM (2016) Prevalence and spectrum of BRCA germline variants in mainland Chinese familial breast and ovarian cancer patients. Oncotarget 7(8):9600–9612.  10.18632/oncotarget.7144 CrossRefPubMedPubMedCentralGoogle Scholar
  34. Komenaka IK, Nodora JN, Madlensky L, Winton LM, Heberer MA, Schwab RB, Weitzel JN, Martinez ME (2016) Participation of low-income women in genetic cancer risk assessment and BRCA 1/2 testing: the experience of a safety-net institution. J Community Genet 7(3):177–183Google Scholar
  35. Kurian AW, Gong GD, Chun NM, Mills MA, Staton AD, Kingham KE, Crawford BB, Lee R, Chan S, Donlon SS, Ridge Y, Panabaker K, West DW, Whittemore AS, Ford JM (2008) Performance of BRCA1/2 mutation prediction models in Asian Americans. J Clin Oncol 26(29):4752–4758. CrossRefPubMedPubMedCentralGoogle Scholar
  36. Kutner M, Greenburg E, Jin Y, Paulsen C (2006) The health literacy of America’s adults: results from the 2003 national assessment of adult literacy. NCES 2006-483. U.S. Department of Education. National Center for Education Statistics, WashingtonGoogle Scholar
  37. Kwong A, Wong CHN, Suen DTK, Co M, Kurian AW, West DW, Ford JM (2012) Accuracy of BRCA1/2 mutation prediction models for different ethnicities and genders: experience in a Southern Chinese cohort. World J Surg 36(4):702–713. CrossRefPubMedPubMedCentralGoogle Scholar
  38. Lara-Otero K, Guerra C, Cheng J, Joseph G (2016) Attitudes towards interpretation services provided to underserved patients during cancer genetic counseling sessions in the public hospital setting: perspectives from genetic counselors and interpreters. NSGC Abstract 2016Google Scholar
  39. Lea DH, Kaphingst KA, Bowen D, Lipkus I, Hadley DW (2011) Communicating genetic and genomic information: health literacy and numeracy considerations. Public Health Genomics 14(4-5):279–289. CrossRefPubMedGoogle Scholar
  40. Lee J, Bell K (2011) The impact of cancer on family relationships among Chinese patients. J Transcult Nurs Off J Transcult Nurs Soc 22(3):225–234. CrossRefGoogle Scholar
  41. Levy DE, Byfield SD, Comstock CB, Garber JE, Syngal S, Crown WH, Shields AE (2011) Underutilization of BRCA1/2 testing to guide breast cancer treatment: black and Hispanic women particularly at risk. Genet Med 13(4):349–355Google Scholar
  42. Lurie N, Dubowitz T (2007) Health disparities and access to health. JAMA 297(10):1118–1121. CrossRefPubMedGoogle Scholar
  43. Lyle J (2003) Stimulated recall: a report on its use in naturalistic research. Br Educ Res J 29(6):861–878. CrossRefGoogle Scholar
  44. Mai PL, Vadaparampil ST, Breen N, McNeel TS, Wideroff L, Graubard BI (2014) Awareness of cancer susceptibility genetic testing. Am J Prev Med 46(5):440–448. CrossRefPubMedPubMedCentralGoogle Scholar
  45. Manuel JC, Burwell SR, Crawford SL, Lawrence RH, Farmer DF, Hege A, Phillips K, Avis NE (2007) Younger Women’s perceptions of coping with breast cancer. Cancer Nurs 30(2):85–94. CrossRefPubMedGoogle Scholar
  46. McCarthy AM, Bristol M, Domchek SM, Groeneveld PW, Kim Y, Motanya UN, Shea JA, Armstrong K (2016) Health care segregation, physician recommendation, and racial disparities in BRCA1/2 testing among women with breast cancer. J Clin Oncol 34(22):2610–2618Google Scholar
  47. Meiser B, Irle J, Lobb E, Barlow-Stewart K (2008) Assessment of the content and process of genetic counseling: a critical review of empirical studies. J Genet Couns 17(5):434–451Google Scholar
  48. Nielsen-Bohlman L, Panzer A, Kindig D (2004) Health literacy: a prescription to end confusion. National Academies Press, Washington, D.C.Google Scholar
  49. Nouri SS, Rudd RE (2015) Health literacy in the “oral exchange”: an important element of patient–provider communication. Patient Educ Couns 98(5):565–571.
  50. Olaya W, Esquivel P, Wong JH, Morgan JW, Freeberg A, Roy-Chowdhury S, Lum SS (2009) Disparities in BRCA testing: when insurance coverage is not a barrier. Papers from the American Society of Breast Surgeons. Presented at the 10th Annual Meeting, San Diego, California, April 22–26, 2009, 198(4):562–565.
  51. Pagán JA, Su D, Li L, Armstrong K, Asch DA (2009) Racial and ethnic disparities in awareness of genetic testing for cancer risk. Am J Prev Med 37(6):524–530. CrossRefPubMedGoogle Scholar
  52. Pal T, Bonner D, Cragun D, Johnson S, Akbari M, Servais L, Narod S, Vadaparampil S (2014) BRCA sequencing and large rearrangement testing in young Black women with breast cancer. J Community Genet 5(2):157–165Google Scholar
  53. Paul J, Metcalfe S, Stirling L, Wilson B, Hodgson J (2015) Analyzing communication in genetic consultations—a systematic review. Patient Educ Couns 98(1):15–33Google Scholar
  54. Pew Research Center’s Soc. Demogr. Trends Proj (2012) The rise of Asian Americans. Accessed 8 Dec 2016
  55. Powe B, Finnie R (2003) Cancer fatalism: the state of the science: cancer nursing. Cancer Nurs 26(6):454–467CrossRefPubMedGoogle Scholar
  56. Ramirez AG, Chalela P, Gallion KJ, Muñoz E, Holden AE, Burhansstipanov L, Smith SA, Wong-Kim E, Wyatt SW, Suarez L (2015) Attitudes toward breast cancer genetic testing in five special population groups. J Health Dispar Res Pract 8(4):124–135Google Scholar
  57. Ricker C, Lagos V, Feldman N, Hiyama S, Fuentes S, Kumar V, Gonzalez K, Palomares M, Blazer K, Lowstuter K, MacDonald D, Weitzel J (2006) If we build it... will they come?–establishing a cancer genetics services clinic for an underserved predominantly Latina cohort. J Genet Couns 15(6):505–514Google Scholar
  58. Riley BD, Culver JO, Skrzynia C, Senter LA, Peters JA, Costalas JW, …, McKinnon WC (2012) Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors. J Genet Couns 21(2)151–161.
  59. Roat C, Joseph G, Guerra C, Cheng J, Lee R, Lara-Otero K (2016) Interpreting for cancer genetics. Retrieved from Accessed 13 Oct 2016
  60. Roter DL, Erby LH, Larson S, Ellington L (2007) Assessing oral literacy demand in genetic counseling dialogue: preliminary test of a conceptual framework. Soc Sci Med 65(7):1442–1457. CrossRefPubMedPubMedCentralGoogle Scholar
  61. Saba GW, Wong ST, Schillinger D, Fernandez A, Somkin CP, Wilson CC, Grumbach K (2006) Shared decision making and the experience of partnership in primary care. Ann Fam Med 4(1):54–62. CrossRefPubMedPubMedCentralGoogle Scholar
  62. Schillinger D (2007) Literacy and health communication: reversing the ‘inverse care law’. Am J Bioeth 7(11):15–18.
  63. Schillinger D, Piette J, Grumbach K, Wang F, Wilson C, Daher C, Leong-Grotz K, Castro C, Bindman AB (2003) Closing the loop: physician communication with diabetic patients who have low health literacy. Arch Intern Med 163(1):83–90. CrossRefPubMedGoogle Scholar
  64. Sheppard VB, Mays D, LaVeist T, Tercyak KP (2013) Medical mistrust and self-efficacy influence black women’s level of engagement in BRCA1/2 genetic counseling and testing. J Natl Med Assoc 105(1):17–22. CrossRefPubMedPubMedCentralGoogle Scholar
  65. Stableford S, Mettger W (2007) Plain language: a strategic response to the health literacy challenge. J Public Health Policy 28(1):71–93Google Scholar
  66. Strauss AL, Corbin JM (1990) Basics of qualitative research. Sage Publications, Thousand OaksGoogle Scholar
  67. Sudore RL, Schillinger, D (2009) Interventions to improve care for patients with limited health literacy. J Clin Outcomes Manag 16(1):20Google Scholar
  68. Sudore RL, Landefeld CS, Pérez-Stable EJ, Bibbins-Domingo K, Williams BA, Schillinger D (2009) Unraveling the relationship between literacy, language proficiency, and patient–physician communication. Patient Educ Couns 75(3):398–402. CrossRefPubMedPubMedCentralGoogle Scholar
  69. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion (2000) Healthy People 2010. Chapter 11, Health Communication. 25(8):770–771.
  70. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion (2010) National action plan to improve health literacy. U.S. Department of Health and Human Services, WashingtonGoogle Scholar
  71. Walcott FL, Dunn BK, DeShields M, Baquet C (2014) The Affordable Care Act and genetic testing for inheritable cancer syndromes: impact on high-risk underserved minorities. J Health Care Poor Underserved 25(1A):46–62. CrossRefPubMedGoogle Scholar
  72. Zhang Y-Z, Sheng J-Q, Li S-R, Zhang H (2005) Clinical phenotype and prevalence of hereditary nonpolyposis colorectal cancer syndrome in Chinese population. World J Gastroenterol WJG 11(10):1481–1488. CrossRefPubMedGoogle Scholar
  73. Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A (2007) Validation of the subjective numeracy scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Mak 27(5):663–671. CrossRefGoogle Scholar
  74. Zucca AC, Boyes AW, Lecathelinais C, Girgis A (2010) Life is precious and I’m making the best of it: coping strategies of long-term cancer survivors. Psychooncology 19(12):1268–1276. CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2017

Authors and Affiliations

  1. 1.Department of Anthropology, History & Social MedicineUniversity of CaliforniaSan FranciscoUSA
  2. 2.Department of PsychiatryUniversity of CaliforniaSan FranciscoUSA
  3. 3.Helen Diller Family Comprehensive Cancer CenterUniversity of CaliforniaSan FranciscoUSA
  4. 4.Department of General Internal MedicineUniversity of CaliforniaSan FranciscoUSA
  5. 5.Department of MedicineUniversity of CaliforniaSan FranciscoUSA

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