A Model for Inclusion of Minorities in Genetic Research

Autism is a complex lifelong neurodevelopmental and behavioral disorder that manifests in infancy or early childhood. Although the causes are still unknown, the data suggest that autism and Autism Spectrum Disorders (ASDs) are likely due to genetic and environmental effects. Differences in culture, socioeconomic status, environmental exposures, access to health care and other factors may influence the expression of the underlying genetic architecture and lead to alterations in prevalence and clinical severity. While most large-scale research programs are disproportionately comprised of Caucasian individuals, these recruitment biases compromise the generalizability of current findings and prevent a systematic evaluation of differences across racial/ethnic groups. Therefore, the need to present researchers with effective strategies for successful inclusion of minorities in research is critical and timely. This application requests two years of support to develop a University/Community partnership involving the newly established Center for Genomic and Phenomic studies in Autism at the University of Southern California (USC), the USC University Center for Excellence in Developmental Disabilities Research, Education and Service (USC UCEDD), and Fiesta Educativa, a longstanding community-based education, support and advocacy organization for Latino families with children with disabilities. We are strategically targeting the Latino community because they are the fastest-growing minority population in the state of California and nationally. The goal is to conduct pilot studies that will allow us to systematically develop and evaluate effective strategies for the successful recruitment and retention of a representative sample of Latino subjects to meet the Center's recruitment goals. Specific Aims of this application are to: A. Identify specific barriers to participation in biomedical research among Latino families with children with autism and use that knowledge to develop strategies for recruitment of ASD Latino families for genetic research; B. Develop and pilot an intervention for outreach and recruitment of Latino families by training qualified community leaders to serve as research ambassadors; C. Conduct a cost/benefit analysis of the fiscal and programmatic impact of targeted minority inclusion on the broader Center's research program and budget; D. Lay the groundwork for the development of a model that can help bridge the academic community with parents and consumers from minority communities, to better ensure that minorities with disabilities are appropriately represented in biomedical research.