Explanatory Models of Genetics and Genetic Risk among a Selected Group of Students.

Margo Bergman,Patricia Goodson,Heather Honoré Goltz

doi:10.3389/fpubh.2016.00111

Abstract

This exploratory qualitative study focuses on how college students conceptualize genetics and genetic risk, concepts essential for genetic literacy (GL) and genetic numeracy (GN), components of overall health literacy (HL). HL is dependent on both the background knowledge and culture of a patient, and lower HL is linked to increased morbidity and mortality for a number of chronic health conditions (e.g., diabetes and cancer). A purposive sample of 86 students from three Southwestern universities participated in eight focus groups. The sample ranged in age from 18 to 54 years, and comprised primarily of female (67.4%), single (74.4%), and non-White (57%) participants, none of whom were genetics/biology majors. A holistic-content approach revealed broad categories concerning participants’ explanatory models (EMs) of genetics and genetic risk. Participants’ EMs were grounded in highly contextualized narratives that only partially overlapped with biomedical models. While higher education levels should be associated with predominately knowledge-based EM of genetic risk, this study shows that even in well-educated populations cultural factors can dominate. Study findings reveal gaps in how this sample of young adults obtains, processes, and understands genetic/genomic concepts. Future studies should assess how individuals with low GL and GN obtain and process genetics and genetic risk information and incorporate this information into health decision making. Future work should also address the interaction of communication between health educators, providers, and genetic counselors, to increase patient understanding of genetic risk.

Highlights

The most recent National Assessment of Adult Literacy (NAAL) results indicate over one-third (36%) of US adults have below basic or basic HL, and most minority subgroups had lower HL, on average, than their White counterparts [12]
Further research shows that college students lack general health numeracy skills [17] and, genetic numeracy (GN) or the numerical skills and conceptual knowledge required for interpretation and analysis of genomic and genetic risk [18]
Similar to Lanie and colleagues [26], our study participants’ risk perceptions and understanding of risk information appear to be grounded more in highly contextualized personal, familial, or social narratives than in scientific literacy [over one quarter (26.7%) of participants reported that they, a close friend, or a relative were affected by genetic disorders]

Summary

Introduction

The most recent National Assessment of Adult Literacy (NAAL) results indicate over one-third (36%) of US adults have below basic or basic HL, and most minority subgroups had lower HL, on average, than their White counterparts [12]. Further research shows that college students lack general health numeracy skills [17] and, genetic numeracy (GN) or the numerical skills and conceptual knowledge required for interpretation and analysis of genomic and genetic risk [18]. The lack of GN can affect a person’s ability to understand the risks of genetic disease, their own, but that of their offspring and future generations. Determining what factors shape a person’s genetic risk assessment can highlight where discrepancies between objective and subjective risk develop, discrepancies that have been shown to shape health behaviors [19]

Methods

Results

Discussion

Conclusion