Online Genomes: Problematizing the disruptiveness of direct‐to‐consumer genetic tests

Abstract

AbstractDirect‐to‐consumer genetic tests (DTCGT) provide individualized risk profiles for common diseases through social web techniques. Academic debates have predominantly denounced them as a potentially harmful commercialization of genetics and focused on how laypeople might (mis)understand and (mis)use this information. DTCGT has also stimulated a heterogeneous set of methods and theoretical perspectives in the social sciences, which have drawn on but also complicated a purely medical understanding.DTCGT is unanimously deemed disruptive, albeit for a variety of reasons. The different underlying notions of disruptiveness correspond to an implicit sociology of information resonating with a main sociological framework, namely, rational actor theory, governmentality studies, and ecological approaches to digital practices and infrastructures. Accordingly, three corpora are identified. The first conceives of disruption in terms of medical impact on prospective patients. The second proposes a biopolitical interpretation by framing DTCGT as vectors of new governmentality based on making individuals responsible for disease prediction and prevention. The third scrutinizes users' engagements with data and infrastructures at the intersection of informatics and genomics and locates DTCGT within the broader process of blossoming health digitalization. Accordingly, the disruptive issues at stake mainly concern political and economic aspects related to data sharing and crowdsourcing.