Social Studies of Science · 2019 · 134 citations · 52 references
Public AffairsHealth PolicyPublic PolicyPopulation Health PolicyPrecision MedicinePublic Health PolicyData AnalysisResponsible Data CollectionAccountability In Data PracticesAccountability In Health DataData-driven Strategic Decision-makingHealth Services PolicyRisk Factor Distribution
Personalized medicine, though seemingly individual‑centric, actually relies on extensive data sourcing that reshapes patient and professional roles, yet current policies use data selectively and treat data‑driven decision‑making as a future promise rather than a present obligation. The study aims to examine how promissory data shape accountability in public health policies and the data initiatives they generate. In practice, personalized medicine drives substantial investment in population science, especially in data‑sourcing initiatives.
‘Personalized medicine’ might sound like the very antithesis of population science and public health, with the individual taking the place of the population. However, in practice, personalized medicine generates heavy investments in the population sciences – particularly in data-sourcing initiatives. Intensified data sourcing implies new roles and responsibilities for patients and health professionals, who become responsible not only for data contributions, but also for responding to new uses of data in personalized prevention, drawing upon detailed mapping of risk distribution in the population. Although this population-based ‘personalization’ of prevention and treatment is said to be about making the health services ‘data-driven’, the policies and plans themselves use existing data and evidence in a very selective manner. It is as if data-driven decision-making is a promise for an unspecified future, not a demand on its planning in the present. I therefore suggest interrogating how ‘promissory data’ interact with ideas about accountability in public health policies, and also with the data initiatives that the promises bring about. Intensified data collection might not just be interesting for what it allows authorities to do and know, but also for how its promises of future evidence can be used to postpone action and sidestep uncomfortable knowledge in the present.
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