Trial Information

Using a Communication Intervention to Provide Information About Inherited Risk to Underserved Latino Communities

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.