Article Text
Abstract
Consumer medicine, such as self-monitoring apps and at-home genetic testing, currently creates new markets and patients, fundamentally changing what it takes to be healthy and what it means to be sick. Together, clinical overdiagnosis and consumer medicine epitomize our current epoch of molecular medicine and digital health, in which both the creation of new medical problems and their solutions require increased surveillance and data production. Related to this, many GPs experience demands for preventive testing, creating difficult choices about balancing benefits and harms particularly for asymptomatic people. In this talk, we explore the role of science and health communication in contributing to increased surveillance and overdiagnosis. We analyze efforts to engage patients in Denmark and the US in uptake of preventive precision medicine through participation in biobanking, self-monitoring, and other data-producing initiatives. Our analysis incorporates public policy documents, industry reports, testimonials, and qualitative interviews with GPs regarding uses of precision medicine and patient generated data. Across these sources, we identify narrative and moral drivers of surveillance, intensified data-production, and concerns about overdiagnosis. We call these ‘parables of prevention.’ Parables are timeworn linguistic strategies or stories that teach us how we ought to behave by combining a familiar setting with a novel action and outcome that reveal a moral truth. Patient testimonials are a contemporary example, which typically present the story of a patient who is feeling poorly, adopts a treatment, and experiences improved health. In this case, the familiar setting is illness; the novel action is treatment; and the implicit moral truth is that it is good and right to seek improved health. In our data, however, parables of prevention also promote the adoption of surveillance techniques by healthy people. In this context, the parable of prevention presents the story of a person who uses technologies to test or self-monitor and experiences empowerment by preventing future disease. We argue that parables of prevention work by connecting patient participation with powerful normative scripts about what it means to live well and be a good citizen in a particular society. Here, outcomes are not improved individual health, but the implicit moral goodness of data and data-production. These data are further associated with promissory futures of cure, managing worry, preventing disease, or collective health benefits through research. This approach leaves out or minimizes harms patients may experience as a result of monitoring, testing, misdiagnosis, or overdiagnosis. Strikingly, parables of prevention are not only present in marketing materials of direct-to-consumer companies but are also embedded in policy documents, recruitment materials, and evidenced in clinical encounters. This study lays groundwork for addressing science and health communication as drivers of overdiagnosis by critically viewing narratives embraced by politicians, consultants, researchers, and other proponents of surveillance techniques for precision prevention.