Abstract
BackgroundStudies 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.MethodsSecondary 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.ResultsOf 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).ConclusionsIndividuals 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 registrationClinicalTrials.gov NCT00089882 and NCT00462917Electronic supplementary materialThe online version of this article (doi:10.1186/s13073-014-0124-0) contains supplementary material, which is available to authorized users.
Highlights
Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results
Half of self-referred participant (SRP) reported learning about the study from a brochure or advertisement, whereas the majority of actively recruited participant (ARP) reported referral from another research study at the same institution
Compared with participants who were part of the ARP and SRP cohorts, the group of participants missing recruitment information was more likely to self-identify as African American (48% versus 21%, P < 0.001) and to have enrolled at the Howard University site (45% versus 22%, P = 0.011)
Summary
Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Individuals who self-refer to an intervention tend to have stronger personal and family histories of disease [11,12,13,14] and stronger concerns about developing the disease [11], but are more likely to engage in intervention activities [15,16] These factors may help explain why self-referred populations are frequently more likely to report behavior changes following an intervention than actively recruited populations [12,15]
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