Communicating Genetic and Genomic Information: Health Literacy and Numeracy Considerations

Abstract

Genomic research is transforming our understanding of the role of genes in health and disease. These advances, and their application to common diseases that affect large segments of the general population, suggest that researchers and practitioners in public health genomics will increasingly be called upon to translate genomic information to individuals with varying levels of health literacy and numeracy. This paper discusses the current state of research regarding public understanding of genetics and genomics, the influence of health literacy and numeracy on genetic communication, and behavioral responses to genetic and genomic information. The existing research suggests that members of the general public have some familiarity with genetic and genomic terms but have gaps in understanding of underlying concepts. Findings from the limited research base to date indicate that health literacy affects understanding of print and oral communications about genetic and genomic information. Numeracy is also likely to be an important predictor of being able to understand and apply this information, although little research has been conducted in this area to date. In addition, although some research has examined behavior change in response to the receipt of information about genetic risk for familial disorders and genomic susceptibility to common, complex diseases, the effects of health literacy and numeracy on these responses have not been examined. Potential areas in which additional research is needed are identified and practical suggestions for presenting numeric risk information are outlined. Public health genomics researchers and practitioners are uniquely positioned to engage in research that explores how different audiences react to and use genomic risk information.

Patient hopes for diagnostic genomic sequencing: roles of uncertainty and social status

“…Unrealistic hopes may needlessly predispose patients and families to greater distress when hopes for sequencing results are inevitably unmet. Poor health literacy and numeracy, 22 unfamiliarity with genetics terminology and patterns of inheritance, 23 and inevitable shifts in interpretation and return of results with advances in genomic medicine 24,25 complicate the communication of strengths and limitations of genomic sequencing. Taking into account patients' level of illness uncertainty and perceived resources could inform the development of guidelines for provider communication by helping providers ascertain patients' frame of reference for their hopes.…”

The Critical Challenge of Educating the Public About Genetics

“…Complexity and uncertainty will be guiding principles in genomic medicine, and providers and the public must know how to deal with them-conceptually and practically, as when making decisions about treatment and management. Complexity and uncertainty will compound the already well-documented challenges related to the public's understanding of risk [13,14].…”

Public Knowledge of and Attitudes Toward Genetics and Genetic Testing

“…Studies suggest that health literacy may impact the understanding of personal genomic risk (Lea et al, 2011). For example, it has been reported that women with lower health literacy recalled less information about a genetic test to predict breast cancer recurrence (although participants in these studies did not actually undergo genetic testing) (Lillie et al, 2007;Brewer et al, 2009).…”

“…Genetic literacy refers to one's knowledge and appreciation of basic genetic (and, in the modern context, genomic) principles, as they inform personal decision making and underlie effective participation in public debates on genetic or genomic issues (McInerney, 2002;Bowling et al, 2008). Some studies have reported low levels of public understanding of genetic concepts (e.g., location of genes) and applications (e.g., newborn screening), although participants displayed familiarity with genetic terminology (Lanie et al, 2004;Miller, 2004;Catz et al, 2005;Lea et al, 2011). In contrast, other studies have shown some public understanding of genetic concepts and genetics research, such as the meaning of a reported genetic association (Bates et al, 2003;Miller, 2004;Levitt et al, 2005).…”