Lessons Learned in Developing Genetic Education for Latinos

The Latin@ Consumer Genetics Education Network (Latin@ CGEN) of the Dominican Women's Development Center developed two sets of educational curricula with the goal of standardizing a Community Health Worker (CHWs -“promotoras de salud”) intervention to provide genetics and health information to the Latino/a community in Northern Manhattan, NYC. One comprehensive curriculum was developed to help train the “promotoras” to build their capacity to advise and implement this project; while the second set of flip-charts for the CHWs focused on health education—equipping them with practical knowledge on genetics and health risk factors to disseminate at community organizations, beauty salons, social clubs, schools and living rooms throughout the community. The curricula were developed using the expertise of local Community Health workers, a geneticist, an adult health literacy consultant, translators, and trained MDs in Latin America and the project's advisory board composed of a diverse set of community members representing academic, community and religious leaders. The development of the curriculum followed a participatory approach in creating culturally appropriate educational materials on genetics, family health history, and reproductive health for the Latino/as. Some challenges faced in implementing the program were utilizing terminologies and educational strategies which were tailored to the community's interests and literacy, and including gender-neutral language in order to reach the community at-large. The Latin@ CGEN is one of five projects funded by March of Dimes and HRSA to help increase genetic literacy among Latino/as, Asian Americans, Native Americans, and African Americans.