The Landscape of Direct-To-Consumer Genetic Testing in Reproductive Health Contexts: An Analytical Framework of Stakeholders and Their Competing Motivations

Abstract

ABSTRACT We propose a theoretical framework that identifies (a) the different categories of stakeholders and (b) the normative values that drive their attitudes toward direct-to-consumer genetic testing, with an emphasis on the reproductive health contexts. We conducted a literature search using varied combinations of search terms, including direct-to-consumer genetic testing, decision-making, reproductive health, and policy. Using a grounded theory approach to existing literature and in combination with a narrative review, we present a systematic framework of five categories of stakeholders (i.e., genome-driven stakeholders, industry-driven stakeholders, history-driven stakeholders, value-driven stakeholders, and social justice-driven stakeholders) that shape the public’s discourse. Moving beyond the dialectical ethics that have governed the public discourse, we also identify the normative values and interests that motivate different stakeholders’ attitudes and decision-making through theoretical sampling under the grounded theory. We investigate the competing and conflicting values within the same category of stakeholders. For example, despite being industry-driven stakeholders, medical professionals’ attitudes are driven by concerns about standards of care; in contrast, health insurance companies’ concerns are centered on profit. We further explore the tensions between these stakeholders that impact their strategic alliances and pose challenges to the practices of direct-to-consumer genetic testing. Finally, we examine how these stakeholders and their corresponding values may shape future development and policies of direct-to-consumer genetic testing in the context of reproductive health.