Managing Risk and Uncertainty During a Novel Epidemic

This dissertation is an analysis of the strategic management of risk and uncertainty in health policy. The question I have posed is: how does the government and its scientific advisers attempt to control the future of a disease when many gaps in our knowledge persist? In particular, I focus on selected debates, discussions, and decisions surrounding the management of Transmissible Spongiform Encephalopathies (TSEs), or prion diseases, in both the US and UK over the past two decades. Between the summer of 2001 and the spring of 2005 I conducted participant-observation research in a variety of settings. Beginning with a few nodes in the network of prion disease management, I followed the network to other nodes, or sites, where knowledge was being produced, disease management actions were being discussed, and decisions were being made. In addition, I conducted semi-structured interviews with 10 family members of patients diagnosed with prion disease, 15 past or present US and UK government employees in positions dealing with prion disease risk management, and 48 scientists from the US, UK, France, Germany, and Switzerland. I found that risk and uncertainty were managed strategically through recourse to metaphors. These metaphors included model systems of the disease and past experiences with other diseases. Uncertainty was further marginalized, or rather disguised, by employing Future Oriented Statistical Projections, or predictions of the ensuing course of a disease based on the aforementioned metaphors. By presenting the future course of a disease as knowable through numbers, the remaining uncertainties appeared to melt away. Further, risk was often treated as though it could be bounded spatially and temporally through recourse to bodily, geographic, and temporal metaphors while the attendant uncertainties were bracketed to produce a momentary feeling of certainty. These strategies offered a means of cloaking risk management decisions in a guise of rationality despite the underlying uncertainties involved. In this way, governments, advisory committees, and other institutions charged with managing disease upheld their mandate to plan for the future in a "rational" manner. Such rationality was often only temporary in appearance, readily dissolving as uncertainties resurfaced.