Creating accessible Spanish language materials for Clinical Sequencing Evidence-Generating Research consortium genomic projects: challenges and lessons learned

Per Med. 2021 Sep;18(5):441-454. doi: 10.2217/pme-2020-0075. Epub 2021 Aug 27.


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.

Keywords: cultural adaptation; genomics research; health disparities; participant materials; translation; underrepresentation.

Plain language summary

Lay abstract To encourage Spanish speakers to join research studies, researchers need to give them written study materials they can easily read and understand. Our study of genome sequencing adapted and translated study materials for use by Spanish speakers across the USA. We describe our process and share our lessons to help others engage Spanish speakers in research. Studies that want to reach Spanish speakers must plan to spend time, effort and money to produce consistent, accurate Spanish-language study materials.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Genomics
  • Hispanic or Latino
  • Humans
  • Language*
  • Surveys and Questionnaires
  • Translating*