Underserved Communities & Genetic Testing: Barriers in Language and Culture

The value of communication between the individual and the clinician in the genetics world is great. How the information is shared, understood, and acted upon can influence the experience of the individual and even their outcomes. Since genetic testing is already a complicated topic, it is essential to understand each unique underserved group. Genetic testing will only continue to evolve, and in order to help as many people as possible, there are still obstacles in language and cultural differences to overcome.
Language barriers can often be an obstacle in communicating genetic information, such as test results. Medical terminology is already complex for the majority of the general public, and if the clinician and individual speak different languages, this can lead to a loss in translation.
In such situations, an interpreter is often needed. While a translator can facilitate the conversation, it can inhibit the ability to form a close relationship and establish trust between the clinician and patient.² Without trust, it’s possible that questions may not be asked and there could be misunderstanding or confusion, even with an interpreter.² Additionally, language barriers can also make it difficult to assess family history and receive an accurate background of any genetic predispositions and disorders.¹ This information can be critical when determining the correct approach to help prevent or even treat the disease. Recruiting a more culturally and linguistically diverse workforce, in addition to providing language that is sensitive, inclusive, and consistent are some of the key solutions to addressing this aspect of the issue.⁵
Groups in the healthcare field have proposed and implemented projects to help bridge the language gap. For example, “Hablamos Juntos” is part of a program working to create universal healthcare symbols, such as maps and images of elevators and doors. It can be difficult for individuals to navigate and get to where they need in a hospital, especially if they can’t read or speak the local language.⁶ Likewise, reviewing translated materials in hospitals to make sure the reading level is accommodating, the information makes sense, and that it is culturally sensitive is crucial.⁶
When it comes to genetic testing, difficulties in communication span beyond language differences; cultural differences can also arise. For example, the Navajo community has strong cultural beliefs that may make it harder to communicate health and genetic information in an understandable and culturally sensitive way.³ Navajo patients find it unsettling to speak negatively about their health, since they believe this will create a self-fulfilling prophecy, and therefore some prefer not to have the conversation at all.³
One can imagine the difficulty this could pose when a clinician needs to present the results of a genetic test. However, there exists socio cultural conflict on the clinicians side as well. Clinicians aren’t necessarily trained to have the cultural competency to successfully address these situations. It’s something that is learned through experience, and as demographics continue to change, it will only become more crucial to understanding how to integrate the beliefs and practices of underrepresented communities to create a more individualized approach to modern medicine, such as for this Navajo community.⁴
In a study by Carrese and Rhodes³, the authors find that approaching sensitive, negative health information in a culturally appropriate way is beneficial to gaining trust in these patient relationships within the Navajo community. This reliance, confidence, and familiarity is important in order to improve connection and faith in the doctor, aiding to bridge the cultural barriers. The study further discusses how to prepare patients before delivering the information by communicating in a kind and respectful manner, having compassion, focusing on positive wording, and speaking in third person when talking about complications and risks.³ Understanding multiple aspects of the patient’s background and self is one key to successfully being able to expand genetic testing and its resources.
Furthermore, one example of a community bringing to light this issue and implementing culturally sensitive changes is the Holy Name Medical Center in New Jersey. Clinicians and healthcare workers are engaging in creating a culturally sensitive environment for Asian-Americans by considering the individuals first. This includes what food to give, (soup and rice vs. sandwich), what color pen to use when writing their name (red vs black ink; red ink can mean death in some Asian cultures), or even how the individual is addressed (either by first or last name).⁷
Truly advancing genetic testing and improving services in underserved populations will involve cooperation from multiple groups working together. It is not enough to have accessible genetic testing services, there also needs to be access to “culturally or linguistically appropriate” services to help those make the best decision for themselves.¹

Click here to watch a short clip about one woman striving to make a difference in her community: https://www.youtube.com/watch?v=knvlZ87HuUg

1. Qureshi, N, M.SC. amd Kai, J, M.D. “Genomic Medicine for Underserved Minority Populations in Family Medicine.” American Family Physician, Aug. 2005.
2. Rachel Marie Ault, “Pitfalls of Communication in a Genetic Counseling Session when Two Languages are Required.” (Ohio State University, 2017), pdf.
3. Carrese, J., MD, MPH and Rhodes, L., PhD. “Bridging Cultural Differences in Medical Practice, The Case of Discussing Negative Information with Navajo Patients.” Journal of General Internal Medicine, Feb. 2016, vol 15. doi: 10.1046/j.1525-1497.2000.03399.x
4. Kodjo, C. “Cultural competence in clinician communication.” National Center for Biotechnology Information, Feb 2009. doi: 10.1542/pir.30-2-57
5. Board on Health Sciences Policy, “Understanding Disparities in Access to Genomic Medicine: A Workshop” (Washington, D.C., 2018), webinar.
6. Hospitalist Management Advisor, “Understand and overcome language, cultural barriers,” HCPro, Oct. 1, 2007. http://www.hcpro.com/HOM-76522-3615/Understand-and-overcome-language-cultural-barriers.html
7. Johnson, S.R. “How a N.J. hospital developed culturally sensitive care for its growing Asian-American population,” Modern Healthcare, Jan. 6, 2018. http://www.modernhealthcare.com/article/20180106/NEWS/180109970