The genomic promise of cancer as “not-yet-treatable” and the moral burden of “trying”

Abstract

Based on fieldwork conducted in China from November 2018 to January 2020 on biomedical innovation with advanced therapies open to foreigners, in this paper I address the question of why parents of children with incurable cancer decide to access experimental treatment on the other side of the world. While work on the “political economy of hope” has already extensively researched the relation between biomedical technology and hope, I delve into other terrains. In this paper, I will discuss the role of “ontological hope” in the moral project of caring for a child with cancer. Drawing on the Anthropology of Ethics, I conclude that in the postgenomic era, when incurable cancers are recategorize as not-yet-treatable, parents’ efforts to access experimental treatment highlight the complex moral work that parents must undergo to imagine a future good life despite their irreparable loss.