Interventions to Educate An Underserved Population About Inherited Disease Risks

How to effectively educate the public about inherited risk is an important communication issue now and will likely become even more important over the next decade. Little research has been conducted, however, to examine how to communicate about this topic with individuals from underserved populations. The planned study provides a unique and innovative opportunity to examine how to reach an underserved community and present information about inherited risk in an understandable and usable form by building upon an existing relationship between NHGRI and the National Council of La Raza (NCLR). NCLR has previously designed a culturally tailored lay health advisor (LHA) intervention designed to increase knowledge and awareness about inherited risk among Latinos and to motivate them to seek information about their family history. The primary objective of this study will be to examine the pathways by which the LHA communication intervention impacts information seeking outcome variables. We will examine the roles of possible mediating variables (i.e., perceived information need, conceptual knowledge, self-efficacy) and assess the effects of contextual variables (i.e., family and personal history of disease, genetic beliefs, acculturation, health care access, sociodemographic variables) on the outcomes. The second objective is to provide quantitative data on the effects of the intervention on information seeking outcome measures (i.e., discussing family history with family members and health care providers) by comparing the intervention to a brochure-only condition; these data can inform the planning of a large-scale randomized controlled intervention trial. A third objective is to examine predictors of intention to seek information about family history at baseline. A quasi-experimental design will be used; we will recruit 350 individuals to participate in the LHA intervention and 200 to a brochure-only comparison group. All participants will be Spanish-speaking healthy volunteers who are at least 18 years of age and have basic Spanish reading and writing skills. Participants will be recruited through community-based clinics in Oakland, CA and Washington, DC and will either participate in a LHA or be asked to read information about family history. They will complete brief, self-administered questionnaires in Spanish before and after participating in the intervention or reading the brochure. Because of the quasi-experimental design, multiple logistic regression models will be used in the analysis in order to control for covariates. Understanding how to effectively inform underserved communities about inherited risk is a research area of critical importance if genomics is to be used to benefit the public health.

• INCLUSION CRITERIA:

All participants in this study will be healthy volunteers. Eligibility criteria for participation in the study are the following: (1) being at least 18 years of age; and (2) being able to speak Spanish and having basic Spanish reading and writing skills.