Access Barriers to Genetic Services for Spanish-speaking Families in States with Rapidly Growing Migrant Populations

Hispanics are among the fastest growing U. S. population segments, accounting for the majority of growth since 2000. Hispanics are heterogeneous and include foreign-born and U.S. citizens, monolingual fluent English speakers, monolingual Spanish-speakers, multilingual speakers, and socioeconomically and educationally diverse subgroups. States within the central United States (U.S.), referred to as the Heartland, have numerically small Hispanic populations, but rapidly growing Hispanic populations that are expanding faster than the overall U.S. Hispanic population. The Hispanic populations across the U.S. are widely known to be medically underserved. This qualitative study identifies barriers native Spanish-speakers experience when locating and accessing genetic services for their children. After providing informed consent, 29 parents in three Heartland states were interviewed and asked about their awareness of available genetic services, utilization of available services and difficulties they encountered when using them. Interviewees reported delayed genetic service referrals, limited availability and inadequate interpretation services, verbal and written communication problems during clinic visits, culturally incongruent healthcare expectations and limited appreciation for how genetic services benefit them. Necessary efforts to understand and improve genetic service access and usefulness for Hispanic populations are underway in the Heartland and elsewhere and should continue to be expanded.