Genetic literacy in direct-to-consumer personal genetic testing : a discursive approach

Abstract

Against the backdrop of increasing public engagement with genetics and health, this dissertation takes a discourse analytic approach to investigate genetic literacy in the emerging context of direct-to-consumer (DTC) personal genetic testing in China. Existing research in medical education and public health focuses on the cognitive aspects of genetic literacy and approaches it as a static form of genetic knowledge. Such an approach, however, fails to account for the complexities of social engagement with genetic testing. Building on insights from sociocultural literacies and discourse epistemics, I formulate a discursive approach to genetic literacy and define it as the dynamic processes in which participants of social interactions discursively construct and negotiate specific forms of genetic knowledge. Drawing on a rich data corpus consisting of one genetic company’s marketing materials, interviews with 16 genetic test users, and 274 online forum interactions between consumers and the company, I examine how these stakeholders of DTC personal genetic testing discursively do genetic literacy. The findings show that the genetic company draws on diverse discourses (e.g. educational, medical, empowerment, and legal) to construct preferred knowledge about the value of DTC personal genetic testing to facilitate its marketing agenda. On the one hand, the company represents the test as a product that empowers consumers to manage their health through knowledge of personalized health risk information; one the other hand, the company disclaims the medical value of the test and renders it as a non-medical product. Therefore, the test is constructed as an informal, health-related product which is situated between medical tests and non-medical consumer products. The analysis of the interviews shows that the consumers discursively construct their knowledgeable epistemic stance towards DTC personal genetic testing to justify their uptake and use of the test. While the consumers primarily take the test to obtain risk information about certain diseases, they display a sophisticated knowledge of the limited medical validity of the test and only regard the test results as general health information that motivates them to modify their lifestyles to enhance their overall health and well-being. The analysis of the forum interactions shows that the genetic company discursively constructs legitimate versions of genetic knowledge (i.e. genetic risks are manageable, and the clinical utility of genetic testing is limited). The consumers explicitly challenge the company’s expertise and problematize its seemingly authoritative versions of genetic knowledge. Through these discursive practices, the consumers become lay experts who actively engage in constructing and negotiating the meanings of the emergent biotechnology of the self. The forms of genetic knowledge arising from DTC personal genetic testing have profound social implications. Specifically, the company’s marketing rhetoric of empowering consumers to actively manage their health with personalized genetic information and the consumers’ accounts of using their test results to enhance their overall health and well-being reflect the ongoing ‘biomedicalization of health’ where health itself has become a site for routine biomedical intervention. These forms of knowledge also manifest a neoliberal ethos of self-governance where the responsibility for health management is attributed to the individual.