Educating Latino communities about genetics and rare diseases: A model project

The National Council of La Raza's Institute for Hispanic Health (NCLR/IHH),conducted a one-year project with the goal of developing culturally-competent ways to reach Latinos with information about genetics/rare diseases, using a variation of NCLR's proven community-based promotores de salud (lay health workers) model.

Focus Group Discussions (FGDs) were conducted to assess Latinos' genetics-related knowledge, comfort level with the topic, understanding, barriers to learning, and preferred methods for education. Based on these findings, culturally-appropriate educational materials were developed – flipchart/training manual – to be used by promotores de salud in two of NCLR's affiliated community-based organizations (Oakland, CA and Washington, DC).

The formative research revealed a general lack of knowledge about genetics, genetic testing, and conditions, and little access to credible culturally- and linguistically-competent information. Most of the promotores (84%) found that the subjects of risk factors, genetics, rare diseases, and family health history were highly relevant to tending to their own and their community's health. In pilot testing, community members indicated that the topic of family health history was very important to them (72%) and expressed an intention to look for additional family health information and share this with family and friends (95%.

This community-driven culturally-appropriate approach successfully integrated information on genetics into topics and themes recognized by Latinos, and produced promising indications of potential behavior change. Similar efforts and results could be achieved with other Latino subgroups. In addition, other minority and “mainstream” organizations could benefit from lessons learned and potentially replicate the project in their own communities.