Creating Accessible Spanish Language Materials for Clinical Sequencing Evidence-Generating Research Consortium Genomic Projects: Challenges and Lessons Learned

Abstract

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.

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.

Keywords::

• cultural adaptation
• genomics research
• health disparities
• participant materials
• translation
• underrepresentation

Author contributions

AM Guttierrez, KF Mittendorf, MA Ramos, B Anguiano and F Angelo contributed to the conceptualization of the manuscript. Conducted the translation and/or adaptation work as described in the manuscript. Individually drafted the presented work and revised it critically for content and style, and contributed to the integration of all portions of the manuscript. Provided final approval to all portions of the manuscript to be published. Agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. G Joseph, contributed to the conceptualization of the manuscript. Edited the presented work and revised it critically for content and style, and contributed to the integration of all portions of the manuscript. Provided final approval to all portions of the manuscript to be published. Agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Acknowledgments

CHARM: The authors acknowledge J Pope and C Angus of the Kaiser Permanente Center for Health Research for editing and administrative assistance, respectively. KidsCanSeq Study: The authors would like to thank ML Jibaja-Weiss and GS Chauca for their work developing the study educational videos in English and Spanish, AM Recinos for help with translating study materials into Spanish and JO Robinson for assistance reviewing and editing this paper. NYCKidSeq Study: The authors would like to thank J Lopez and E Maria (Albert Einstein College of Medicine/Montefiore Medical Center) and J Rodriguez, N Yelton and KL Aguiñiga (Icahn School of Medicine at Mount Sinai) for their valuable contributions to the translation of NYCKidSeq study materials.

Financial & competing interests disclosure

This work was funded as part of the Clinical Sequencing Evidence-Generating Research (CSER) consortium funded by the National Human Genome Research Institute (NHGRI) (UM1HG007292), with co-funding from the National Institute on Minority Health and Health Disparities (NIMHD) and the National Cancer Institute (NCI), supported by U01HG009610 (Mount Sinai), U01HG009599 (UCSF), U01HG006485 (Baylor College of Medicine), UM1HG007292 (KPNW). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Ethical conduct of research

The translation and adaptation work described in this paper preceded subject recruitment and did not involve human subjects. However, the CSER consortium, including the Coordinating Center and all participating sites, obtained IRB approval for all aspects of the research, including final versions of produced materials.

Additional information

Funding

This work was funded as part of the Clinical Sequencing Evidence-Generating Research (CSER) consortium funded by the National Human Genome Research Institute (NHGRI) (UM1HG007292), with co-funding from the National Institute on Minority Health and Health Disparities (NIMHD) and the National Cancer Institute (NCI), supported by U01HG009610 (Mount Sinai), U01HG009599 (UCSF), U01HG006485 (Baylor College of Medicine), UM1HG007292 (KPNW). The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.