Amanda M Gutierrez1, Jill O Robinson1, Emily E Statham1, Sarah Scollon2,3, Katie L Bergstrom2,3, Melody J Slashinski4, Donald W Parsons2,3, Sharon E Plon2,3, Amy L McGuire1, Richard L Street5,6,7. 1. Center for Medical Ethics & Health Policy, Baylor College of Medicine, Houston, TX, USA. 2. Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA. 3. Texas Children's Cancer Center, Texas Children's Hospital, Houston, TX, USA. 4. School of Public Health & Health Sciences, University of Massachusetts, Amherst, MA, USA. 5. Department of Communication, Texas A&M University, College Station, TX, USA. 6. Department of Medicine, Baylor College of Medicine, Houston, TX, USA. 7. Center for Innovation in Healthcare Quality, Effectiveness, & Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, TX, USA.
Abstract
AIM: Describe modifications to technical genomic terminology made by interpreters during disclosure of whole exome sequencing (WES) results. PATIENTS & METHODS: Using discourse analysis, we identified and categorized interpretations of genomic terminology in 42 disclosure sessions where Spanish-speaking parents received their child's WES results either from a clinician using a medical interpreter, or directly from a bilingual physician. RESULTS: Overall, 76% of genomic terms were interpreted accordantly, 11% were misinterpreted and 13% were omitted. Misinterpretations made by interpreters and bilingual physicians included using literal and nonmedical terminology to interpret genomic concepts. CONCLUSION: Modifications to genomic terminology made during interpretation highlight the need to standardize bilingual genomic lexicons. We recommend Spanish terms that can be used to refer to genomic concepts.
AIM: Describe modifications to technical genomic terminology made by interpreters during disclosure of whole exome sequencing (WES) results. PATIENTS & METHODS: Using discourse analysis, we identified and categorized interpretations of genomic terminology in 42 disclosure sessions where Spanish-speaking parents received their child's WES results either from a clinician using a medical interpreter, or directly from a bilingual physician. RESULTS: Overall, 76% of genomic terms were interpreted accordantly, 11% were misinterpreted and 13% were omitted. Misinterpretations made by interpreters and bilingual physicians included using literal and nonmedical terminology to interpret genomic concepts. CONCLUSION: Modifications to genomic terminology made during interpretation highlight the need to standardize bilingual genomic lexicons. We recommend Spanish terms that can be used to refer to genomic concepts.
Entities:
Keywords:
Spanish-speakers; communication barriers; genomic terminology; genomics; interpretation accuracy; medical interpreters
Authors: Laura M Amendola; Jonathan S Berg; Carol R Horowitz; Frank Angelo; Jeannette T Bensen; Barbara B Biesecker; Leslie G Biesecker; Gregory M Cooper; Kelly East; Kelly Filipski; Stephanie M Fullerton; Bruce D Gelb; Katrina A B Goddard; Benyam Hailu; Ragan Hart; Kristen Hassmiller-Lich; Galen Joseph; Eimear E Kenny; Barbara A Koenig; Sara Knight; Pui-Yan Kwok; Katie L Lewis; Amy L McGuire; Mary E Norton; Jeffrey Ou; Donald W Parsons; Bradford C Powell; Neil Risch; Mimsie Robinson; Christine Rini; Sarah Scollon; Anne M Slavotinek; David L Veenstra; Melissa P Wasserstein; Benjamin S Wilfond; Lucia A Hindorff; Sharon E Plon; Gail P Jarvik Journal: Am J Hum Genet Date: 2018-09-06 Impact factor: 11.025
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