Health and Kinship Matter: Learning About Direct-To-Consumer Genetic Testing User Experiences via Online Discussions (1904.02065v1)

Abstract: Direct-to-consumer (DTC) genetic testing has gained in popularity over the past decade, with over 12 million consumers to date. Given its increasing stature in society, along with weak regulatory oversight, it is important to learn about actual consumers' testing experiences. Traditional interviews or survey-based studies have been limited in that they had small sample sizes or lacked detailed descriptions of personal experiences. Yet many people are now sharing their DTC genetic testing experiences via online social media platforms. In this paper, we focused on one particularly lively online discussion forum, \textit{r/23andme} subreddit, where, as of before March 2018, 5,857 users published 37,183 posts. We applied topic modeling to the posts and examined the identified topics and temporal posting trends. We further applied regression analysis to learn the association between the attention that a submission received, in terms of votes and comments, and the posting content. Our findings indicate that bursts of the increase of such online discussion in 2017 may correlate with the Food and Drug Administration's authorization for marketing of 23andMe genetic test on health risks, as well as the hot sale of 23andMe's products on Black Friday. While ancestry composition was a popular subject, kinship was steadily growing towards a major online discussion topic. Moreover, compared with other topics, health and kinship were more likely to receive attention, in terms of votes, while testing reports were more likely to receive attention, in term of comments. Our findings suggest that people may not always be prepared to deal with the unexpected consequences of DTC genetic testing. Moreover, it appears that the users in this subreddit might not sufficiently consider privacy when taking a test or seeking an interpretation from a third-party service provider.