Consumer perceptions of direct-to-consumer personalized genomic risk assessments

Purpose: To evaluate consumer perceptions of direct-to-consumer personalized genomic risk assessments and assess the extent to which consumer characteristics may be associated with attitudes toward testing. Methods: Adult participants aged 18-85 years of age purchased a personalized genomic risk test at a subsidized rate and were administered a web-based health assessment that included questions regarding perceptions and attitudes toward undergoing testing. Results: Assessments were obtained for 3640 individual study participants, and 49.7% expressed overall concerns about undergoing testing. Logistic regression analysis revealed that women were more likely to express concerns (odds ratio [OR] = 1.20, 95% confidence interval [CI]: 1.04-1.39), as were individuals employed by a health care organization (OR = 1.23, 95% CI: 1.04-1.46). Further, younger age (OR = 0.97, 95% CI: 0.96-0.98), higher education (OR = 1.09, 95% CI: 1.04-1.14), and higher trait anxiety (OR = 1.28, 95% CI: 1.20-1.37) were also significantly associated with expressing concerns related to testing. Attitudes regarding disclosure of genetic risk for a nonpreventable disease were also assessed. None of the individuals in our sample indicated that they would definitely not want to know their risk, and a total of 82.4% indicated that they would want to know. Conclusion: Among individuals who undergo direct-to-consumer genetic testing, approximately half still express concerns about the process/experience. Further, given that concerns vary among different subgroups of consumers, if the clinical validity and utility of these tests are demonstrated, tailored genetic education and counseling services may be of benefit. Genet Med 2010:12(9):556-566.