Consuming Genomes: The Coproduction of a New Scientific and Technological Order for Genetic Testing

At the intersection of consumer culture, venture capital, biotechnology, and increased patient autonomy, a new biomedical service industry has emerged. Since 2006 companies in the US have been altering the landscape of health care by offering Direct-to-Consumer (DTC) genetic testing for a variety of diseases and traits. Recently, the activities of 23andMe and Navigenics, the two leading providers of DTC genetic services, have come under the scrutiny of various regulators and institutions, including the Food and Drug Administration (FDA) and the House of Representatives’ Committee on Energy and Commerce. In this dissertation, I situate direct-to-consumer genetic testing within the historical trajectory of genetic testing technology and the increasing profitability of information technology and biomedicine. I then analyze the recent encounters between DTC providers and regulators to identify the key scientific and discursive resources that are being employed to position the genetic testing technology with respect to regulatory initiatives. My empirical analysis of a rich set of primary sources (including websites, policy documents, and interviews) shows that the emergence of DTC genetic testing is a conspicuous instance of coproduction: a new social and technological order for genetic testing has led to the emergence of a new figure, the genetic consumer.