Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions

Millions of people have undergone direct-to-consumer genetic testing (DTC-GT), but little is known about individuals' motivations and experiences (e.g., discussion topics and emotions after obtaining the test results) in engaging with DTC-GT services. Previous studies either involved only a small number of DTC-GT consumers or were based on hypothetical scenarios.

Our study aimed to fill this gap by investigating online discussions about DTC-GT that developed naturally among tens of thousands of social media users.

We focused on the posts that were published in the r/23andme and r/AncestryDNA subreddits, which correspond to the two companies with the largest number of consumers in the DTC-GT market. We applied computational methods to infer and examine the topics discussed, temporal trends in posting rates and themes (e.g., aggregation of related topics), and emotions expressed in these online forums.

We collected 157,000 posts published by 16,500 Reddit users between 2013 and 2019. We found that the posting rates increased sharply after popular promotional events (e.g., each Amazon Prime Day and Black Friday) and most posts were inquiries into, or status updates about, testing progress. The inferred themes of Ancestral Origin and Kinship/Feelings were the two most frequently discussed, while discussions about the Health Risks theme focused primarily on submitting DTC-GT raw data to third parties for interpretation. The Kinship/Feelings theme exhibited the largest range of emotional response. A qualitative review of the posts with extreme emotions showed that some people became excited because they found their biological parents or other kin, while others became upset because they unexpectedly found that their parents or other kin were not biologically related to them.

This research demonstrates that online social media platforms can serve as a rich resource for characterizing actual DTC-GT experiences. The findings suggest that DTC-GT consumers' purchasing behaviors are associated with societal events and that future investigations should consider how DTC-GT challenges our understanding of kinship structure and function, genomic privacy, and the interpretation of health risks.