The Cut-Off Problem: Epistemic Controversy and the Situated Ethics of Healthcare Rationing

• In Event: Situated Ethics and Normativities in Knowledge Making and Communities of Practice - II

Abstract

As biomedical innovations put healthcare budgets under strain, debates ensue over what constitutes an acceptable basis for the rationing of scarce resources (Moreira 2010). Demonstrating the entanglement of value and knowledge in communities of practice, these debates often unfold as controversies about the simultaneous settling of what constitutes proper value and how it is to be properly established (Kjellberg & Helgesson 2013). This paper analyses a recent controversy about the rationing of medical resources in the publicly funded Danish healthcare system concerning a new treatment for the rare disease 5q spinal muscular atrophy, which causes severe muscle degeneration in children. A very costly treatment, this pharmaceutical was the first to be formally restricted in clinical use based on arguments about costs in relation to effectiveness. Accordingly, a line was drawn between the children who were granted access, and the ones who were not. Building on ongoing fieldwork (May 2018-), we trace the ‘career’ of the resulting cut-off (Rosoff 2017) exploring how it clashed and altered in interaction with diverse evaluative repertoires (Moreira 2005) conveying various notions of the ‘good’. We demonstrate how the cut-off evolved over time from a controversial demarcation to a rather stabilized boundary, as it incorporated forms knowledge and value esteemed in different domains. Attending to the rationing process as a matter of care (de la Bellacasa 2011), we aim to grasp the involvement, mediation and exclusion of ethico-political positions in the rationing process and stimulate a discussion that goes beyond the technical aspects of rationing.

Authors

• Sarah Wadmann, The Danish Center for Social Science Research

• Amalie Martinus Hauge, The Danish Center for Social Science Research