Characteristics of an Online Consumer Genetic Research Cohort

The increasing availability of internet access and the decreasing costs of generating genetic information have created a new group of individuals who are active internet users with access to their own genetic information. We hypothesized that these individuals would be interested in sharing their genotypic and phenotypic information for research if given the opportunity to do so by providing data online, thus removing any geographic restriction for participating in a study. All customers of 23andMe, a direct-toconsumer genetic testing company, were recruited for an ongoing research project entitled 23andWe. We evaluated consent rate, demographics (including sex, age, education, household income, and genetic ancestry), and research questionnaire response rate in this cohort. Close to 90% of customers consented to participate in 23andWe, and of those, again close to 90% of participants answered at least one research question, with an average of 11 questionnaires completed, and 64 singular “Research Snippet” questions answered. Despite the fact that the majority of customers did not obtain the 23andMe service in order to participate in research, we have found that most are willing to contribute their data for research and that the vast majority actively contribute additional phenotypic data online, suggesting that tapping into consumer interest in genetics and research is a viable method for conducting large-scale studies. !