Genetic Services and Literacy in Latino Communities: A Community Conversation Addressing Maternal and Child Health Needs

Genomic health literacy and access to maternal and child genetic health services can empower patients to make informed decisions about their health and that of their children. Research demonstrates that some of the leading causes of death among Latinos in the United States have or may have a genetic component. However, genomic health literacy of the Latino community, as well as their participation in genomic health services for health promotion and disease prevention, has lagged compared to other groups in the mainstream population.

To address this need, the National Council of La Raza's (NCLR) Institute for Hispanic Health, in collaboration with the National Human Genome Research Institute, and an NCLR Affiliate, Mary's Center, conducted the Community Conversation Model One project to assess knowledge, attitudes, and behavior around maternal and child genetic health and genetic health services among Latinos and their health care providers in Washington, DC. Data analysis from focus groups and in-depth interviews suggest that Latinos in underserved communities have little or no exposure to genetic health services, procedures, and benefits during and after pregnancy. When services were received, parents perceived the information as confusing and worrisome.

Although providers reported they understood the importance of genetic health services, they stated they were unable to meet their patients' needs for genetic health care due to limited time, lack of culturally competent and linguistically appropriate educational resources, and low capacity to communicate genetic health knowledge. NCLR will present experiences in the project's processes and outcomes with special emphasis on community involvement.