Purpose Inadequate literacy is common among patients with diabetes and may lead to adverse outcomes. We reviewed the relationship between literacy and health outcomes in patients with diabetes and potential interventions to improve such outcomes. Methods We reviewed 79 articles covering three key domains: 1) evaluation of screening tools to identify inadequate literacy and numeracy; 2) the relationships of a range of diabetes-related health outcomes with literacy and numeracy; and 3) interventions to reduce literacy-related differences in health outcomes. Results Several screening tools are available to assess patients' print literacy and numeracy skills, some of which specifically address diabetes. Literacy and numeracy are consistently associated with diabetes-related knowledge. Some studies suggest literacy and numeracy are associated with intermediate outcomes, including self-efficacy, communication, and self-care (including adherence), but the relationship between literacy and glycemic control is mixed. Few studies have assessed more distal health outcomes, including diabetes-related complications, health care utilization, safety, or quality of life, but available studies suggest low literacy may be associated with an increased risk of complications, including hypoglycemia. Several interventions appear effective in improving diabetes-related outcomes regardless of literacy status, but it is unclear if these interventions can reduce literacy-related differences in outcomes. Conclusions Low literacy is associated with less diabetes-related knowledge and may be related to other important health outcomes. Further studies are needed to better elucidate pathways by which literacy skills affect health outcomes. Promising interventions are available to improve diabetes outcomes for patients with low literacy, but more research is needed to determine their effectiveness outside of research settings.

Genome sequencing has been rapidly integrated into clinical research and is currently marketed to health-care practitioners and consumers alike. The volume of sequencing data generated for a single individual and the wide range of findings from wholegenome sequencing raise critical questions about the return of results and their potential value for end-users. We conducted a mixed-methods study of 311 sequential participants in the NIH ClinSeq study to assess general preferences and specific attitudes toward learning results. We tested how these variables predicted intentions to receive results within four categories of findings ranging from medically actionable to variants of unknown significance. Two hundred and ninety-four participants indicated a preference to learn their genome sequencing results. Most often, participants cited disease prevention as their reason, including intention to change their lifestyle behaviors. Participants held positive attitudes, strongly perceived social norms and strong intentions to learn results, although there were significant mean differences among four categories of findings (Po0.01). Attitudes and social norms for medically actionable and carrier results were most similar and rated the highest. Participants distinguished among the types and quality of information they may receive, despite strong intentions to learn all results presented. These intentions were motivated by confidence in their ability to use the information to prevent future disease and a belief in the value of even uninterpretable information. It behooves investigators to facilitate participants' desire to learn a range of information from genomic sequencing while promoting realistic expectations for its clinical and personal utility.

This report describes the use of information emerging from genetic discovery to motivate risk-reducing health behaviors. Most research to date has evaluated the effects of information related to rare genetic variants on screening behaviors, in which genetic risk feedback has been associated consistently with improved screening adherence. The limited research with common genetic variants suggests that genetic information, when based on single-gene variants with low-risk probabilities, has little impact on behavior. The effect on behavioral outcomes of more realistic testing scenarios in which genetic risk is based on numerous genetic variants is largely unexplored. Little attention has been directed to matching genetic information to the literacy levels of target audiences. Another promising area for research is consideration of using genetic information to identify risk shared within kinship networks and to expand the influence of behavior change beyond the individual.

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.

There is a need to investigate which health information sources are used and trusted by people with limited health literacy to help identify strategies for addressing knowledge gaps that can contribute to preventable illness. We examined whether health literacy was associated with people's use of and trust in a range of potential health information sources. Six hundred participants from a GfK Internet survey panel completed an online survey. We assessed health literacy using the Newest Vital Sign, the sources participants used to get health information, and the extent to which participants trusted health information from these sources. We performed multivariable regressions, controlling for demographic characteristics. Lower health literacy was associated with lower odds of using medical websites for health information and with higher odds of using television, social media, and blogs or celebrity webpages. People with lower health literacy were less likely to trust health information from specialist doctors and dentists, but more likely to trust television, social media, blogs/celebrity webpages, friends, and pharmaceutical companies. People with limited health literacy had higher rates of using and trusting sources such as social media and blogs, which might contain lower quality health information compared to information from healthcare professionals. Thus, it might be necessary to enhance the public's ability to evaluate the quality of health information sources. The results of this study could be used to improve the reach of high-quality health information among people with limited health literacy and thereby increase the effectiveness of health communication programs and campaigns.

The social-context model holds promise for reducing disparities in health behaviors. Further research is needed to improve the effectiveness of the intervention.

Purpose Examination of patients’ responses to direct-to-consumer genetic susceptibility tests is needed to inform clinical practice. This study examined patients’ recall and interpretation of, and responses to, genetic susceptibility test results provided directly by mail. Methods This observational study had 3 prospective assessments (before testing; 10 days after receiving results; 3 months later). Participants were 199 patients aged 25–40 who received free genetic susceptibility testing for 8 common health conditions. Results Over 80% correctly recalled their results for the 8 health conditions. Patients were unlikely to interpret genetic results as deterministic of health outcomes (mean=6.0, SD=0.8 on 1–7 scale, 1 indicating strongly deterministic). In multivariate analyses, patients with the least deterministic interpretations were White (p=.0098), more educated (p=.0093), and least confused by results (p=.001). Only 1% talked about their results with a provider. Conclusion Findings suggest that most patients will correctly recall their results and will not interpret genetics as the sole cause of diseases. The subset of those confused by results could benefit from consultation with a health care provider, which could emphasize that health habits currently are the best predictors of risk. Providers could leverage patients’ interest in genetic tests to encourage behavior changes to reduce disease risk.

Genomic discoveries will increasingly advance the science of medicine. Limited genomic literacy may adversely impact the public’s understanding and use of the power of genetics and genomics in health care and public health. In November 2011, a meeting was held by the National Human Genome Research Institute to examine the challenge of achieving genomic literacy for the general public, from K-12 to adult education. The role of the media in disseminating scientific messages and in perpetuating, or reducing, misconceptions was also discussed. Workshop participants agreed that genomic literacy will only be achieved through active engagement between genomics experts and the varied constituencies that comprise the public. This report summarizes the background, content, and outcomes from this meeting, including recommendations for a research agenda to inform decisions about how to advance genomic literacy in our society.