Implicit Incentives Among Reddit Users to Prioritize Attention Over Privacy and Reveal Their Faces When Discussing Direct-to-Consumer Genetic Test Results: Topic and Attention Analysis

BACKGROUND: As direct-to-consumer genetic testing services have grown in popularity, the public has increasingly relied upon online forums to discuss and share their test results. Initially, users did so anonymously, but more recently, they have included face images when discussing their results. Various studies have shown that sharing images on social media tends to elicit more replies. However, users who do this forgo their privacy. When these images truthfully represent a user, they have the potential to disclose that user’s identity. OBJECTIVE: This study investigates the face image sharing behavior of direct-to-consumer genetic testing users in an online environment to determine if there exists an association between face image sharing and the attention received from other users. METHODS: This study focused on r/23andme, a subreddit dedicated to discussing direct-to-consumer genetic testing results and their implications. We applied natural language processing to infer the themes associated with posts that included a face image. We applied a regression analysis to characterize the association between the attention that a post received, in terms of the number of comments, the karma score (defined as the number of upvotes minus the number of downvotes), and whether the post contained a face image. RESULTS: We collected over 15,000 posts from the r/23andme subreddit, published between 2012 and 2020. Face image posting began in late 2019 and grew rapidly, with over 800 individuals revealing their faces by early 2020. The topics in posts including a face were primarily about sharing, discussing ancestry composition, or sharing family reunion photos with relatives discovered via direct-to-consumer genetic testing. On average, posts including a face image received 60% (5/8) more comments and had karma scores 2.4 times higher than other posts. CONCLUSIONS: Direct-to-consumer genetic testing consumers in the r/23andme subreddit are increasingly posting face images and testing reports on social platforms. The association between face image posting and a greater level of attention suggests that people are forgoing their privacy in exchange for attention from others. To mitigate this risk, platform organizers and moderators could inform users about the risk of posting face images in a direct, explicit manner to make it clear that their privacy may be compromised if personal images are shared.