Purpose-As direct to consumer (DTC) genetic testing becomes more available, a diverse group of consumers, including those with limited health literacy, may consider testing. In light of concerns raised about DTC genetic testing, this study sought to critically examine whether the informational content, literacy demands, and usability of health-related DTC websites met existing recommendations.Methods-A content analysis was performed on 29 health-related DTC websites. Two coders independently evaluated each website for informational content (e.g., benefits, limitations), literacy demands (e.g., reading level), and usability (e.g., ease of navigation).Results-Most sites presented health conditions and some markers for which they tested, benefits of testing, a description of the testing process, and their privacy policy. Fewer cited scientific literature, explained test limitations or provided an opportunity to consult a health professional. Key informational content was difficult to locate on most sites. Few sites gave sample disease risk estimates, or used common language and explained technical terms consistently. Average reading level was grade 15.Conclusion-The quality of informational content, literacy demands, and usability across health-related DTC websites varied widely. Many users would struggle to find and understand the important information. In order for consumers to better understand the content on these sites and evaluate the meaning of the tests for their health, sites should lower the demands placed on users by distilling and prioritizing the key informational content while simultaneously attending to the reading level and usability elements. In the absence of regulation compelling such changes, government agencies or professional organizations may need to increase consumer and provider awareness of these issues.

Objectives: This study examined the levels of genetic knowledge, health literacy and beliefs about causation of health conditions among individuals in different age groups. Methods: Individuals (n = 971) recruited through 8 community health centers in Suffolk County, New York, completed a one-time survey. Results: Levels of genetic knowledge were lower among individuals in older age groups (26–35, p = 0.011; 36–49, p = 0.002; 50 years and older, p<0.001) compared to those in the youngest age group (18–25). Participants in the oldest age group also had lower health literacy than those in the youngest group (p <0.001). Those in the oldest group were more likely to endorse genetic (OR = 1.87, p = 0.008) and less likely to endorse behavioral factors like diet, exercise and smoking (OR = 0.55, p = 0.010) as causes of a person’s body weight than those in the youngest group. Higher levels of genetic knowledge were associated with higher likelihood of behavioral attribution for body weight (OR = 1.25, p <0.001). Conclusions: Providing additional information that compensates for their lower genetic knowledge may help individuals in older age groups benefit from rapidly emerging genetic health information more fully. Increasing the levels of genetic knowledge about common complex diseases may help motivate individuals to engage in health promoting behaviors to maintain healthy weight through increases in behavioral causal attributions.

Health professionals need to be able to communicate information about genomic susceptibility in understandable and usable ways, but substantial challenges are involved. We developed four learning modules that varied along two factors: (1) learning mode (active learning vs. didactic learning) and (2) metaphor (risk elevator vs. bridge) and tested them using a 2×2 between-subjects, repeated measures design. The study used an innovative virtual reality technology experimental platform; four virtual worlds were designed to convey the concept that genetic and behavioral factors interact to affect common disease risk. The primary outcome was comprehension (recall, transfer). Study participants were 42 undergraduates aged 19–23. The results indicated that the elevator metaphor better supported learning of the concept than the bridge metaphor. Mean transfer score was significantly higher for the elevator metaphor (p<0.05). Mean change in recall was significantly higher for didactic learning than active learning (p<0.05). However, mean ratings for variables posited to be associated with better learning (e.g., motivation) were generally higher for the active learning worlds. The results suggested that active learning might not always be more effective than didactic learning in increasing comprehension of health information. The findings also indicated that less complex metaphors might convey abstract concepts more effectively.

Background: Family health history (FHH) is a tool used to inform individuals about inherited disease risk. Due to their disproportionate morbidity and mortality from some common chronic diseases, U.S. Latinos are an important audience for FHH information. This study examined the effects of a culturally-tailored intervention led by lay health advisors (LHAs) in delivering information about FHH on participants’ intentions, self-efficacy, and conceptual knowledge. Methods: 474 Spanish-speaking Latino participants were enrolled in the study. Individuals in the intervention group participated in a single group educational session using discussion and interactive activities to build skills for discussing FHH with one’s family members and doctor, while individuals in the comparison group had a brochure read aloud to them. Pre- and post-test questionnaires were verbally administered. Results: Primary dependent variables were intentions and self-efficacy to discuss FHH with family members and doctors; these increased in both groups. Multivariate analyses demonstrated that the intervention led to a significantly greater increase in self-efficacy to discuss FHH with family members (p = 0.03). LHA participants were also more than twice as likely (OR = 2.6, 95% CI = 1.3–5.0) to correctly understand the purpose of a FHH and found FHH information more useful (p < 0.0001). Conclusions: A communication intervention delivered by LHAs shows promise as an effective means of educating underserved Spanish-speaking Latinos about the importance of FHH for disease prevention. Such community-based approaches can help to close knowledge and skills gaps about FHH and increase confidence in using this information to improve the health of those most at risk.

Objective Few studies have examined how individuals respond to genomic risk information for common, chronic diseases. This randomized study examined differences in responses by type of genomic information [genetic test/family history] and disease condition [diabetes/heart disease] and by race/ethnicity in a medically underserved population. Methods 1057 English-speaking adults completed a survey containing one of four vignettes (two-by-two randomized design). Differences in dependent variables (i.e., interest in receiving genomic assessment, discussing with doctor or family, changing health habits) by experimental condition and race/ethnicity were examined using chi-squared tests and multivariable regression analysis. Results No significant differences were found in dependent variables by type of genomic information or disease condition. In multivariable models, Hispanics were more interested in receiving a genomic assessment than Whites (OR=1.93; p<0.0001); respondents with marginal (OR=1.54; p=0.005) or limited (OR=1.85; p=0.009) health literacy had greater interest than those with adequate health literacy. Blacks (OR=1.78; p=0.001) and Hispanics (OR=1.85; p=0.001) had greater interest in discussing information with family than Whites. Non-Hispanic Blacks (OR=1.45; p=0.04) had greater interest in discussing genomic information with a doctor than Whites. Blacks (β= −0.41; p<0.001) and Hispanics (β= −0.25; p=0.033) intended to change fewer health habits than Whites; health literacy was negatively associated with number of health habits participants intended to change. Conclusions Findings suggest that race/ethnicity may affect responses to genomic risk information. Additional research could examine how cognitive representations of this information differ across racial/ethnic groups. Health literacy is also critical to consider in developing approaches to communicating genomic information.

Inadequate knowledge of family health history (FHH) continues to be a major obstacle limiting its usefulness in public health and clinical practice; strategies to facilitate FHH dissemination are needed. Data (N = 1,334) were obtained through waiting-room surveys completed by a diverse sample of patients attending three community health centers. Perceptions about the importance of genetic information (β = 0.13, p < 0.001; β = 0.11, p < 0.001) and higher genetic self-efficacy (β = 0.14, p < 0.001; β = 0.23, p < 0.001) were significantly associated with higher levels of perceived familiarity with and importance of FHH, respectively. Furthermore, beliefs about genetic causation of illnesses (β = 0.12, p < 0.001) and a wider reach of health communication within one's family (β = 0.15, p < 0.001) were associated with higher levels of perceived familiarity with one's FHH. Participants in the oldest group (>50 years) reported higher familiarity than those in the youngest (18-25 years). Those with higher familiarity were significantly less likely to answer "don't know" when reporting diabetes and heart disease diagnoses among immediate (OR = 0.35 and OR = 0.29, respectively) and extended (OR = 0.50 and OR = 0.46, respectively) family members. Having a wider health communication reach within a family may be beneficial in increasing familiarity with FHH; however, the reported levels of communication reach were limited among most participants. Women, older-generation family members, and those who believe in the importance of genetics in health or feel confident about using genetic information may be particularly important as targets of public health interventions to facilitate FHH dissemination within families.

Objective Family history contributes to risk for many common chronic diseases. Little research has investigated patient factors affecting communication of this information. Methods 1061 adult community health center patients were surveyed. We examined factors related to frequency of discussions about family health history (FHH) with family members and doctors. Results Patients who talked frequently with family members about FHH were more likely to report a family history of cancer (p=.012) and heart disease (p<.001), seek health information frequently in newspapers (p<.001) and in general (p<.001), and be female (p<.001). Patients who talked frequently with doctors about FHH were more likely to report a family history of heart disease (p=.011), meet physical activity recommendations (p=.022), seek health information frequently in newspapers (p<.001) and in general (p<.001), be female (p<.001), and not have experienced racial discrimination in healthcare (p<.001). Conclusion Patients with a family history of some diseases, those not meeting physical activity recommendations, and those who do not frequently seek health information may not have ongoing FHH discussions. Practice Implications Interventions are needed to encourage providers to update patients’ family histories systematically and assist patients in initiating FHH conversations in order to use this information for disease prevention and control.

Measurement of race and ethnicity is integral to assessing and addressing health disparities experienced by minorities. However, the unique experiences of Latinos related to race and the discordance between understandings of race among Latinos and the predominant U.S. conceptualizations of this construct impact how Latinos respond to measurement approaches. As a result, data collection methodologies often yield ambiguous responses that reveal little about this population. This paper examines Latinos’ racial responding, and how this relates to their experiences and understanding of their racial identity. We recommend the use of a combined race and ethnicity question and open-ended race and ethnicity questions, when feasible, which will likely yield more meaningful data that can be used to address this populations’ health needs.