Exploring Lay Understanding of Genetic Concepts to Inform Communication of Genetic Health Information

Background: Rapid advancements in genetic and genomic research have increased public awareness of the role of heredity in human health and disease. However, research suggests that the lay public may not fully comprehend associated genetic concepts. This study examines the meaning of the genetic recessive condition sickle cell trait from the prospective of the African American lay community, as a preliminary step to tailoring genetic health information.

Methods/Study Population: Open-ended, online surveys were completed by African Americans (N=300) who were unaware of their sickle cell trait status. Content analysis on participant responses identified frequencies of categories and emerging themes regarding the concept of sickle cell trait. Coding of responses occurred in three phases: 1) In vivo coding; 2) frequency of categories; and 3) thematic analysis.

Objective/Goals: 1)Describe a qualitative method to identify community perspectives of sickle cell trait.2)To define sickle cell trait from the perspective of high-risk African Africans.3)To illustrate the need for more effective strategies to communicate complicated genetic health information.

Results/Anticipated Results: Thematic analysis yielded four emerging themes illustrating conceptions of sickle cell trait: 1) Inability to discern between sickle cell disease and sickle cell trait; 2) Recognition of the inheritance pattern of sickle cell trait; 3) Inadequate knowledge of sickle cell trait; and 4) Perceived importance of sickle cell trait.