Good conduct in a context of rationing: A case study of how frontline professionals deal with distributive dilemmas of novel gene therapies

Abstract

Classical dilemmas of how to distribute limited resources have been rekindled by the rise of advanced, high-cost therapies. Building on a case study of a novel gene therapy in neuropaediatric care, this article explores the dilemmas that explicit priority setting can create for frontline professionals and develops a typology of professionals’ responses to these dilemmas. Despite political attempts to centralise priority setting and spare health professionals from having to consider treatment costs at the ‘bedside’, this study shows that concern for economic efficiency and budget control nonetheless need to be handled and balanced against other accountabilities in the daily work of frontline professionals. Contributing to the sociological debate on priority setting and rationing, this study develops an analytical perspective attuned to the relational aspects of frontline work and the challenges related to the balancing of diverging ideas of good conduct. Further, focussing on an empirical field at the forefront of genomic medicine, this study brings the sociological debate on priority setting and rationing up to date with current developments in precision medicine.