Background: Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Examining the influence of different study recruitment strategies may help reconcile inconsistencies. Methods: Secondary analyses were conducted on data from the REVEAL study, a series of randomized clinical trials examining the impact of genetic susceptibility testing for Alzheimer’s disease (AD). We tested whether self-referred participants (SRPs) were more likely than actively recruited participants (ARPs) to report health behavior and advance planning changes after AD risk and APOE genotype disclosure. Results: Of 795 participants with known recruitment status, 546 (69%) were self-referred and 249 (31%) had been actively recruited. SRPs were younger, less likely to identify as African American, had higher household incomes, and were more attentive to AD than ARPs (all P < 0.01). They also dropped out of the study before genetic risk disclosure less frequently (26% versus 41%, P < 0.001). Cohorts did not differ in their likelihood of reporting a change to at least one health behavior 6 weeks and 12 months after genetic risk disclosure, nor in intentions to change at least one behavior in the future. However, interaction effects were observed where ε4-positive SRPs were more likely than ε4-negative SRPs to report changes specifically to mental activities (38% vs 19%, p < 0.001) and diets (21% vs 12%, p = 0.016) six weeks post-disclosure, whereas differences between ε4-positive and ε4-negative ARPs were not evident for mental activities (15% vs 21%, p = 0.413) or diets (8% versus 16%, P = 0.190). Similarly, ε4-positive participants were more likely than ε4-negative participants to report intentions to change long-term care insurance among SRPs (20% vs 5%, p < 0.001), but not ARPs (5% versus 9%, P = 0.365). Conclusions: Individuals who proactively seek AD genetic risk assessment are more likely to undergo testing and use results to inform behavior changes than those who respond to genetic testing offers. These results demonstrate how the behavioral impact of genetic risk information may vary according to the models by which services are provided, and suggest that how participants are recruited into translational genomics research can influence findings. Trial registration: ClinicalTrials.gov NCT00089882 and NCT00462917

Background: Disease-related stigma is a public health concern steadily gaining global attention. Evidence consistently shows that an individual's attribution of disease cause can prompt or justify interpersonal stigma. However, few studies have explored causal beliefs about inherited disease and their influence on stigmatising behaviours in low and middle income countries.Design and methods: The study was conducted in 2013, in six communities in Wolaita zone, Southern Ethiopia. A total of 1800 respondents took part in the study, 600 were affected by an inherited disease and 1200 were unaffected neighbours. Two versions of the interviewer-administered survey were created, with measures assessed in parallel on experienced stigma for the affected and enacted stigma for unaffected respondents.Results: Mean levels of enacted stigma reported by unaffected respondents were slightly lower (2.0, SD=0.7) than experienced stigma reported by affected respondents [2.2 (standard deviation=1.1)]. Beliefs that podoconiosis was hereditary were significantly and positively associated with levels of enacted stigma reported by unaffected respondents and experienced stigma reported by affected respondents (P<0.001). There was no association of reported levels of stigma experienced by affected respondents with levels of enacted stigma reported by the neighbouring unaffected respondents. Males consistently reported significantly lower levels of experienced and enacted stigma than females, P<0.0001.Conclusions: If stigma reduction interventions are to be successful, culturally tailored, gender inclusive and innovative health education programs are required, directed at the general community as well as individuals affected by inherited diseases.

Background To understand whether patient‐reported experiences with lung cancer may create teachable moments (TM) for their relatives as evidenced by shifts in their risk perceptions, affective response, and self‐image and in turn, motivation to quit smoking. Methods Patients at a comprehensive cancer center (n = 152) completed a survey within 6 months of lung cancer diagnosis to assess their cancer‐related symptoms and openness and enumerated relatives who were smokers. Relative smokers (n = 218) then completed a survey assessing their risk perceptions, affective response, and self‐image as a smoker related to the patient's diagnosis (TM mechanisms), and their motivation to quit smoking. Cross‐sectional mediation and moderation analyses were conducted to explore the links between patient‐reported experiences, and relatives' TM mechanisms, and motivation to quit smoking. Results Relative‐reported affect was a significant mediator of the association between patient‐reported symptoms and relative smoker's desire to quit. Relatives' self‐image was a significant moderator of the association between patient‐reported symptoms and relative smoker's desire to quit, such that patients' reported symptoms were associated with relatives' desire to quit only when the relative smoker reported a generally positive self‐image as a smoker. No evidence was found for moderated mediation. However, the link between symptoms and negative affect was moderated by perceptions of risk. Conclusion Whether smokers experience a family member's lung cancer as a TM is influenced by multiple interrelated cognitive and affective factors that warrant further exploration. Clearer understanding of these factors could inform how to re‐invigorate and sustain this motivation to promote concrete actions toward smoking cessation. Copyright © 2015 John Wiley & Sons, Ltd.