Doctoral Dissertation: Genetic Screening at Home: Interpretive Policy Analysis of Direct-to-Consumer Genetic Testing

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This project examines federal regulations regarding direct-to-consumer advertising of genetic testing. It asks two main questions: (1) How are US federal regulatory agencies like the Food and Drug administration categorizing, analyzing, and regulating direct-to-consumer genetic testing; and (2) What influence do other groups such as professional organizations, advocacy groups, and research institutes have on the regulation of direct-to-consumer genetics? While scholars have critically examined how genetic tests perpetuate certain identities and social categories, we know little about the processes by which genetic testing is being regulated. The present study advances our understanding of this issue in relation to three major trends occurring in biomedicine. These include a shift from genetic diagnosis to genetic risk, the redefinition of the patient as a consumer, and the de-medicalization of genetics. This project thus increases our scholarly understanding of direct-to-consumer genetic testing as it is unfolding within broader social and cultural transformations occurring in medicine and health. This is a multi-method social science investigation of factors shaping federal regulations regarding direct-to-consumer genetic testing. Primary data for the project come from archival documents, interviews, and participant observations. The main goal of the project is to understand how federal agencies conceptualize and regulate direct-to-consumer advertising of genetic tests, and the relative power of outside stakeholder groups to shape federal regulations surrounding commercial genetic testing. Undertaking this research enables an enhanced understanding of ethical issues surrounding direct-to-consumer genetic testing and of how the concepts of risk, diagnoses, and genetics are used in these contexts and in the context of current transformations in medicine and health. Results will be shared with the broader community to educate citizens about the regulation of direct-to-consumer genetic testing and about the influence of stakeholders in the federal regulatory process.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.