Online Genetics for Health: An Empirical Investigation of How Users Matter

Abstract

This thesis is an empirical study of why and how users do online genetics for health. Research on these users is needed to inform current academic debates and upcoming policy decisions on this emergent technical practice. Since 2017, online genetics companies have intensified their efforts to legitimize themselves as scientific sources of health information. In this context, I apply a sociological “users matter” lens to understand how users play a role in interpreting this technical practice. Specifically, I pose two research questions: (1) Why do people do online genetics for health? (2) How do users engage with and interpret health information from online genetics? I interviewed ten (10) users in total. In terms of motives, participants pursue this practice largely for curiosity and identity formation. Some also have specific health questions about which they are curious. To a lesser extent, some users are interested in perceived social benefits, like challenging experts and contributing to research. In terms of interpretation: The users I interviewed see themselves as maintaining a “scientific” engagement with online genetics for health, and they do not find truth or meaning in their genetic results. This suggests that, at least for this group of users, online genetics is not as “transformative” as some critics and proponents have assumed. This study demonstrates how users (and their social identities) matter: despite recent efforts by online genetics companies to construct themselves as medically and scientifically valid sources of health information, these users interpret online genetics in different ways, largely pursuing it for identity development and often questioning its medical and scientific legitimacy because they identify as scientific and skeptical users.