Promising precision medicine: how patients, clinicians and caregivers work to realize the potential of genomics-informed cancer care

Abstract

This paper examines the emerging field of molecular oncology, in which targeted treatments are sought for patients who have exhausted standard cancer therapies. Drawing on an ethnographic study at a U.S. academic medical center, and building on recent theoretical work examining potentiality as a site where expectations, meaning and value are produced, I describe efforts to translate genetic information into extended life for patients. Clinicians, patients and families performed various types of largely-unrecognized labor that invested precision medicine with potential even when life-prolonging therapies remained elusive. Their future-making work was enabled and constrained by the structural conditions of U.S. health care. In this context potentiality was a generative force that was harnessed to the interests and inequities of a market-driven health system, raising important questions about who is able to participate in, contribute to, and benefit from emerging innovations and narratives of hope.

Keywords

• precision medicine
• potentiality
• cancer
• genomics
• equity