Genetic counseling

Found in Translation: Making Genetic Counseling More Accessible

Language matters, especially in genetic counseling. Today's challenges, plus four recommendations to make genetic counseling more accessible and equitable.

When you walk into a hospital, what do you hear? Phones ringing, keyboards clicking, bells chiming, announcements booming, and footsteps racing, all mixing against the steady background hum of human conversations. In many parts of the United States, you’ll hear patients speaking all sorts of different languages. We have the privilege of interacting with people from a seemingly infinite number of backgrounds, many of whom have their own dialect. It is an enriching experience to hear so many languages, but this can be difficult to navigate in the healthcare space. From my experience working in hybrid clinical and laboratory settings, I know some of the challenges that healthcare providers face when communicating with patients include:

  • A limited number of in-person interpreters, making it difficult to book interpreters for visits
  • Dropped phone calls with interpreters, and issues reconnecting multiple parties
  • Limited mobility of tablets used for video interpreters, which usually must stay plugged-in

Healthcare providers have a responsibility to take care of patients the best they can and make sure they understand as much as possible, however, there are many obstacles when the patient speaks a language the provider does not. This is something every specialty encounters, but in this post, I'll cover how this impacts genetic counseling specifically and what I suggest doing to improve accessibility and health equity in the profession.

An image of thank you messages in different languages on bright colored paper

Speaking their language: Genetic Counselors 

Genetic counselors (GCs) are licensed healthcare professionals that help advise, assess, educate, support, facilitate, and advocate for patients who may benefit from genetic testing or may have a genetic condition. To start, let’s take a look at the current state of language in the US and the language capabilities of US-based GCs. The US Census Bureau estimates there are over 380 distinct languages spoken in this country; though this may be a vast undercount, as the Endangered Language Alliance reports at least 700 languages are spoken in the New York City metropolitan area alone.

The US Census Bureau indicates Spanish is the second most frequently used language in the US, with more than 40.5 million speakers in 2020. Of those, 39.3% have limited English proficiency (LEP) which is defined by the US Census Bureau as those who speak English less than “very well”. In 2018, LEP individuals represented about 8.3% of the US population aged five years and older. However, in some parts of the country, LEP individuals may represent over 32% of the local population. The literature documents how LEP individuals consistently receive lower quality of care than English-proficient individuals on several different measures, including treatment plans and disease processes, satisfaction with care, and incidence of medical errors resulting in physical harm.[1][2][3][4]

It’s important to note that the US has no official language designation at the federal level, so by extension, there should be no expectation that a patient must learn English in order to receive quality healthcare. In fact, the National Society of Genetic Counselors (NSGC) Code of Ethics states in section II article 3 that genetic counselors agree to: “Provide genetic counseling services to their clients regardless of their clients’ abilities, age, culture, religion, ethnicity, language, sexual orientation and gender identity.”

So how does the genetic counseling field currently manage such immense and diverse language needs? The 2022 NSGC Professional Status Survey (PSS), a yearly online survey sent to all NSGC members, indicates that only ~181 (6%) counselors provide services in a language other than English. In total, only 19 non-English languages are represented by the GC community and of those, only 73 genetic counselors (5%) provide services in Spanish. This means that most visits with LEP patients require interpretation services. 

It is ideal if a patient’s GC is fluent in the patient’s preferred language, though it is impractical to expect a GC to speak every language they may encounter. In addition, GCs are often discouraged from counseling in non-English languages unless they are 100% fluent and/or certified (for liability reasons). This can create an unnecessary barrier to care, especially for less “technical” conversations in a visit, such as those where rapport is established. Unfortunately, most health systems do not encourage or provide opportunities to learn even the basics of a second language to help their providers establish rapport with their patients.

Additionally, not every language is always available in the format that is best for the patient, particularly if it is not known in advance of the appointment if an interpreter will be needed. For example, patients and providers may need to wait several hours for an available audio-only interpreter. The wait for a live interpreter may be several days, in which case appointments will need to be rescheduled.

How language affects care: A real experience

This experience, recounted by a neuro-oncologist and health equity advocate, demonstrates how a language barrier and improper handling by referring providers led to unnecessary evaluations and delayed care of one of their patients:

Image of a Twitter thread featuring @JoshuaBundu MD

The replies and comments sparked by this physician sharing their experience further illustrates these types of situations are all too common, and more needs to be done to prevent them from happening.

Many patients have reported similar experiences with language barriers and communication challenges. Patients may feel stigma from asking for an interpreter, or from a provider asking the patient if they need an interpreter if their English is not noticeably strong. Again, a provider’s ability to have conversational and non-medical discussions could help reduce or eliminate this stigma.

Recommendations for improvement

How can we close these gaps in care, reduce language barriers, and improve the quality of care? I have four recommendations:

  1. First, the US needs to continue its push for diversity, equity, and inclusion (DEI) in the workforce. Multi-lingual speakers are a valuable resource for any company and expanding access to second-language training is essential to providing the highest quality of care.

    An image of different bodies riding different size bikes to show the difference between equity and equality
  2. Health systems can also invest in robust, easy-to-access and readily available interpreter services, including technology solutions like audio-visual interpreters, and further reduce barriers through automation with chatbots and other software solutions. Igentify offers dynamic, multi-lingual, individualized and personalized videos for consenting and result disclosure. Software solutions have come a long way in the last few years and are now much more user- and mobile-friendly. An additional benefit of these solutions is that the patient can often choose their preferred language and engage with the content in the privacy of their own home. Igentify’s videos allow patients to watch the educational or test results videos multiple times and share with family members instead of trying to relay that information to their loved ones themselves. We also should not forget the importance of key features like closed captioning on video content for the individuals and communities who need it.

  3. GCs and other genetics professionals should start collaborations with medical interpreter services to improve medical genetics competencies. While certified medical interpreters are often familiar with other aspects of the medical vocabulary, the field of genetics is extremely complex and there are not often direct translations for words or concepts. We know of some GC’s who regularly use interpreter services have contacted their service provider or assigned interpreters in advance of appointments to provide a list of common genetics terms and concepts to allow the interpreters time to research how to translate into the patient’s preferred language. This can dramatically increase understanding and the flow of the appointments, putting both the patient and provider at ease.

  4. Companies should encourage a culture of health equity where the quality of care for LEP individuals is expected to be the same as those who are English proficient. When a language barrier presents itself, we should all remember the healthcare provider may not understand the patient and the patient does not understand the provider, therefore both parties need an interpreter.

[1] Baker DW, Parker RM, Williams MV, Coates WC, Pitkin K. Use and effectiveness of interpreters in an emergency department. JAMA. 1996;275(10):783-788.
[2] Wilson E, Chen AH, Grumbach K, Wang F, Fernandez A. Effects of limited English proficiency and physician language on health care comprehension. J Gen Intern Med. 2005;20(9):800-806.
[3] Atchison KA, Black EE, Leathers R, et al. A qualitative report of patient problems and postoperative instructions. J Oral Maxillofac Surg. 2005;63(4):449-456.
[4] Divi C, Koss RG, Schmaltz SP, Loeb JM. Language proficiency and adverse events in US hospitals: a pilot study. Int J Qual Health Care. 2007;19(2):60-67.

Here's a quick clip of an Igentify video (available in several languages) that is an example of #2 above:

A brief gif of Igentify multilingual support

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