The gene “goalkeeper”: Exploring Spanish interpretation of genetic information

Imagine you are a patient in a foreign country where you don’t speak the language. You meet with a doctor and a medical interpreter to learn your results from a recent genetic test.

In between the interpreter’s explanations of complicated genetic concepts and use of unfamiliar medical terms, you’re told that you are a “goalkeeper” of a certain gene. You’ve never heard “goalkeeper” used that way before, but then again, you’re not an expert in genetics. What would you do?

This confusion can be a reality for non-English-speaking patients in the Texas Medical Center (TMC). TMC hospitals treat diverse patient populations, welcoming about 20,000 international patients per year, not to mention the patients who live in the United States but don’t speak English as their primary language. In Houston, the U.S. Census Bureau estimates that at least a quarter of the city’s population is limited English proficient (LEP). And as the LEP population in the U.S. continues to grow, so will the number of LEP patients seeking healthcare.

Given this reality, TMC hospitals employ an army of medical interpreters. Accurate medical interpretation is key to ensuring LEP patients receive the same quality of care as those who are fluent or native English-speakers. And research has shown that professional medical interpreters do improve communication and health outcomes for LEP patients.

But medicine, like language, is ever-changing. We create new therapies and technologies at a rate that can outpace our ability to develop bilingual translations of new technical language for medical interpreters. For example, in genetic medicine, new terms have emerged to describe advances in testing technology, like “genome sequencing,” and different types of genetic test results, like “variants of uncertain significance.”

But what happens in the interim, when a technology is so new that we don’t yet have standardized terms to describe it in other languages?

We explored this question in a TMC-based study using a type of genetic testing called whole exome sequencing in the care of children with cancer. We examined dozens of transcripts of genetic test result meetings with clinicians, interpreters, and Spanish-speaking families to gauge how accurate Spanish interpreters were in conveying complex genetic terminology to families.

We found that interpreters did a pretty good job getting the meaning of technical genetic terms across in Spanish. But they weren’t perfect: all the interpreters either misinterpreted or omitted genetic terms at least once. Some errors included literal interpretations of medical genetic terms, such as interpreting a genetic carrier (“portador”) as a soccer goalkeeper or a doorman (“portero”).

As the use of genetic testing increases, standardized sets of technical genetic vocabulary in other languages will become increasingly necessary. Otherwise, these small interpretation mistakes may add up to LEP patients receiving less accurate and less complete information about their genetic test results, and perhaps even about their diagnoses and treatment.

Luckily, there are some concrete solutions to this problem. Through our study, we realized one quick fix was to create a brief Spanish genetic vocabulary guide. We compiled the best Spanish translations of common genetic terms and made a cheat sheet that Spanish interpreters can use to learn and reference translations both before and during genetic test result meetings with Spanish-speaking families.

Interpretation is difficult, fast-paced work. Quick reference tools like this will help make interpreters’ jobs a bit easier as well as improve the quality of genetic information that LEP patients receive.

However, this is just one small part of the solution to the broader global issue of standardizing genetic terms in languages besides English and Spanish. On a larger scale, the development of internationally-accepted sets of technical genetic vocabulary in other languages is essential to ensure that interpreters around the world have the knowledge necessary to deliver genetic information accurately to patients.

-By Amanda Gutierrez, research assistant in the Center for Medical Ethics and Health Policy at Baylor College of Medicine