Personalized medicine raises pressing questions about priority setting. How to draw the line?
The categorization of disease is a pillar not only for medical reasoning, but also for the distribution of healthcare resources and patients’ access to care.
While disease categories may seem to neutrally reflect biological differences, social studies of science and medicine demonstrate that conceptions of disease and its proper treatment are also shaped by cultural beliefs, social processes and political interests. Yet it is not well understood how the categorization of disease influences and is influenced by economic concerns.
The current surge of personalized medicine makes the question of which categories of human differences and similarities should influence economic prioritizations all the more pressing.
Personalized medicine refers to ambitions of redefining diagnostic categories and targeting therapies to genetic markers of disease, leading to more granular patient groups. A touted promise of personalized medicine is to reduce overtreatment and overspending through greater accuracy. However, personalized therapies also bring new uncertainties and unprecedentedly high pricing. Often, it is uncertain how genetic traits relate to phenotypic characteristics. Moreover, small patient populations challenge established scientific methods for determining cost-effectiveness, though the rising prices make prioritization more pressing.
Based on ethnographic fieldwork in four clinical settings, we investigate how disease categorization and economic concerns influence each other when treatments become increasingly personalized. We also examine the implications of this interplay for patients’ access to treatment and their experiences of community and marginalization in the Danish welfare state.
Research questions guiding the project:
- Which ideas about human similarities and differences are enacted when treatment decisions that involve personalized medicine are made?
- How do economic concerns and government techniques influence the categorization of disease and patients’ access to treatment?
- Which implications can the interplay between disease categorization and economic concerns have for patients’ experiences of community and marginalization in the Danish welfare state?
Our aim is to provide insights that can establish a basis for public dialogue about the economic, social and ethical implications of medical innovation. The processes of priority setting that arise along with medical innovation are not merely technocratic process – they contribute to establishing ideas about what constitutes a valuable treatment for whom. We seek to develop concepts that can capture and foster debate about these issues.