Moral Innovation without Market Incentives: The (Im)possibilities of Pediatric Drug Development Under Current Pharmaceutical Models

• In Event: Transforming the Development & Governance of Pharmaceuticals - II

Abstract

Pediatric brain tumors (PBT) are the leading cause of cancer-related death in children under the age of 20. Standard treatments are often ineffective and have significant effects on quality of life. New “precision medicine” treatments using genomic and molecular analyses have a great deal of potential, but there seem to be barriers in bringing targeted treatments to pediatric populations. Rare diseases like PBT affect small numbers of children; stakeholders in research and industry argue that there is no incentive to for industry to invest money to in developing drugs for such small markets. Through participant observation in workshops and conferences and in-depth interviews with 70 stakeholders, we map the moral, technical, and social ecosystem of pediatric brain tumor research and treatment, revealing a complex and layered system of barriers and opportunities. In this paper, we first discuss how the current pipeline model of drug innovation does not account for relational complexity and communication flows, and by extension, cannot address failures. We then show how a small group of industry stakeholders are attempting to remedy the problems of a lack of incentives and small markets by appealing to a moral obligation to children’s health that exceeds a for-profit framework. Their experience is evidence that financial and technological fixes are insufficient to address social and ethical quandaries at the heart of medicine, ultimately revealing the complexity of furthering innovation and care.

Authors

• Kasia Tolwinski, McGill University

• Margaret Chiappetta, York University