Open AccessCreating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned
Author(s) -
Nangel M. Lindberg,
Amanda M. Gutierrez,
Kathleen F. Mittendorf,
Michelle Ramos,
Beatriz Anguiano,
Frank Angelo,
Galen Joseph
Publication year - 2021
Publication title -
personalized medicine
Language(s) - English
Resource type - Journals
eISSN - 1744-828X
pISSN - 1741-0541
DOI - 10.2217/pme-2020-0075
Subject(s) - genomics , data science , process (computing) , computer science , genome , biology , genetics , gene , operating system
Aim: To increase Spanish speakers' representation in genomics research, accessible study materials on genetic topics must be made available in Spanish. Materials & methods: The Clinical Sequencing Evidence-Generating Research consortium is evaluating genome sequencing for underserved populations. All sites needed Spanish translation of recruitment materials, surveys and return of results. Results: We describe our process for translating site-specific materials, as well as shared measures across sites, to inform future efforts to engage Spanish speakers in research. Conclusion: In translating and adapting study materials for roughly 1000 Spanish speakers across the USA, and harmonizing translated measures across diverse sites, we overcame numerous challenges. Translation should be performed by professionals. Studies must allocate sufficient time, effort and budget to translate and adapt participant materials.