Nangel M Lindberg1, Amanda M Gutierrez2, Kathleen F Mittendorf1, Michelle A Ramos3, Beatriz Anguiano4, Frank Angelo5, Galen Joseph6. 1. Kaiser Permanente Northwest Center for Health Research, 3800 N. Interstate Ave, Portland, OR 97227, USA. 2. Baylor College of Medicine Center for Medical Ethics & Health Policy, One Baylor Plaza, Suite 310D, Houston, TX 77030, USA. 3. Department of Population Health Science & Policy Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Place, Box 1077, New York, NY 10029, USA. 4. University of California, San Francisco (UCSF) Program in Bioethics, 3333 California Ave (suite 340), San Francisco, CA 94606, USA. 5. CSER Coordinating Center, University of Washington, Division of Medical Genetics, Health Sciences Building, K-253 Box 357720 Seattle, WA 98195, USA. 6. University of California San Francisco Department of Humanities & Social Sciences, 1450 3rd Street, Rm. 551 San Francisco, CA 94143, USA.
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.
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.
Entities:
Keywords:
cultural adaptation; genomics research; health disparities; participant materials; translation; underrepresentation
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