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

Abstract

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.