Evaluation of an education intervention to support genomics research participation: a community-based pre-post study among participants under-represented in diabetes genomics research.

OBJECTIVE: Develop and study a culturally tailored genomics education tool to better inform future consent processes for genomics research participation among a medically underserved population with diabetes. DESIGN: A single-arm, cohort pre/postsurvey study to assess an educational intervention developed using a community engaged approach. SETTING: Federally Qualified Health Centers in San Diego. PARTICIPANTS: previously trained to offer bilingual diabetes education and support were also invited; 34 enrolled and completed the study. INTERVENTION: Using community-engaged research approaches, we developed a genomics education programme to include required elements of informed consent for future diabetes genomics research. The 1-hour, face-to-face genomics education programme was delivered 14 times with a variety of day versus evening and weekday versus weekend options, across a 9-month period. Participants completed a 21-item survey, which included 12 items measuring genomics knowledge and 9 items assessing attitudes towards genomics in healthcare. PRIMARY AND SECONDARY OUTCOME MEASURES: subgroups, difference between patient pre and posteducation mean total attitude scores, and prescore to postscore changes within each knowledge and attitude survey item. An exploratory analysis of associations between preintervention scores and sociodemographic characteristics was also completed. RESULTS: (mean 6.8, SD1.3) demonstrated a more positive attitude than patients (mean 6.0, SD=1.4) (p=0.0008). Patient attitudes towards genomic testing did not change significantly from preintervention to postintervention (6.2 (SD=1.4) vs 6.3 (SD=1.4), p=0.51). CONCLUSIONS: A community-informed education intervention improved genomics knowledge in an under-represented population, providing a model to foster more adequately informed consent for advanced technology research participation.