JMIR Publications

ABSTRACT

Background:

As direct-to-consumer genetic testing (DTC-GT) services have grown in popularity, the public has increasingly relied upon online forums to discuss and share their test results. Initially, users did so under a pseudonym, but more recently, they have included face images when discussing DTC-GT results. When these images truthfully represent a user, they reveal the identity of the corresponding individual. Various studies have shown that sharing images in social media tends to elicit more replies. However, users who do this clearly forgo their privacy.

Objective:

This study aimed to investigate the face image sharing behavior of DTC-GT users in an online environment and determine if there exists the association between face image sharing and the attention received from others.

Methods:

This study focused on r/23andme, a subreddit dedicated to discussing DTC-GT 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 learn the association between the attention that a post received, in terms of the number of comments and karma scores (defined as the number of upvotes minus the number of downvotes), and whether the post contains 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 or discussing ancestry composition, and sharing family reunion photos with relatives discovered via DTC-GT. On average, posts including a face received 60% (5/8) more comments than other posts, and these posts had karma scores 2.4 times higher than other posts.

Conclusions:

DTC-GT 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 the risk of face image posting, platforms, or at least subreddit organizers, should inform users about the consequence of such behavior for identity disclosure.