Senior Research Seminar with Dr Ignacia Arteaga (University of Cambridge)
Disentangling hype from hope in cancer care: When biomarker discovery and novel forms of patient work meet
Novel biomedical cancer treatments that seek to halt imminent death and alleviate suffering in the UK, Europe and North America increasingly aim to be both “personalised.” and “patient-centric”. However, these two notions are not synonymous and sometimes sit at odds with each other. While personalisation relies on the “datafication” of aspects of human life through the use of genomic biomarkers, patient-centredness considers instead the changing preferences, relationships, and circumstances of the person seeking help. This means, for example, that while the genomic makeup of a patient might point to the appropriateness of a novel treatment for their advanced cancer (personalisation), such a recommendation might not consider what the patient and their support network are prepared to do to gain access to such a treatment (patient-centredness).
In this paper, I examine the efforts made by cancer patients and health professionals to find a meeting point between these two aims through what Barbara Prainsack calls “personalisation from below”. Drawing on 17 months of fieldwork with patients and health professionals in a gastrointestinal cancer clinic in London, the paper looks at some of the social realities of Pembrolizumab's promised efficacy, an immunotherapy regime currently under clinical trial in the UK for patients with metastatic colorectal cancer. I tease out the practices through which scientists and clinicians assemble genomic biomarkers to predict patients’ individual responses to this and other new cancer treatments; the strategies that patients and their support networks develop to participate in these innovations that are not yet approved but nevertheless seem necessary for survival; and the temporal, bureaucratic, and socio-economic constraints that limit the promised outcomes of these treatments. Focusing on “drug efficacy” as an outcome distributed across a set of relationships rather than something dependent on the molecular configuration of a drug, I explore some of the tensions that materialise when personalisation is shaped from below.