Clara Felicity Fabian-Therond

Pathways to personalisation: The practice of BRCA stratification

Personalised medicine is gathering pace across advanced cancer settings in the UK NHS, and care pathways are becoming increasingly filled with different steps, stages and treatments. One key personalised medicine practice is stratifying patients according to their molecular profile. Nevertheless, understanding how this practice shapes lived experience of cancer patients remains an under-researched area. To shed light on this question this paper focuses on the practice of stratifying patients according to their BRCA gene prior to or at the beginning of a late-stage ovarian cancer personalised medicine pathway. I draw on interviews and observations with 17 ovarian cancer patients, who formed part of a larger comparative ethnographic study, which took place between 2020 and 2021 in a tertiary hospital in the South-East of England. Focus on this one practice made it possible to demonstrate how as well as being a diagnostic tool stratification is an affective technology that cultivates range of feelings including inclusion or exclusion, and novel kinds of 'biosociality' (Rabinow, 1999). These findings offer critical insight into the importance to separate and scrutinise its practices on long pathways to understand the lived and felt experience of care.

The narrative paradox of the BRCA gene: an ethnographic study in the clinical encounters of ovarian cancer patients

In this era of personalisation a patient's molecular profile plays an increasingly central role in development and delivery of personalised medicine. This paper sets out to explore the sociocultural implications of mainstreaming BRCA genetic testing in the treatment of advanced ovarian cancer patients, who carry a BRCA1 or BRCA2 gene mutation. It draws on ethnographic research conducted by between April-June 2016 in a large tertiary London hospital. Participant observation was conducted across two sites. For the first two weeks participant observation was conducted in the traditional genetic testing setting in two separate clinics. From thereon, participant observation was conducted in the clinical encounters of treating patients in the ovarian cancer clinic. In addition, face-to-face interviews were conducted with medical oncologists who worked in the clinic. Contributing to the fields of cancer genetics, personalised medicine and medical material culture studies in medical anthropology the paper seeks to further discussions about the interactions and relationships unfolding between medical objects and subjects across the landscape of cancer care. It highlights the importance of clinic-based ethnography to examine the complexities of identities and technologies as they intersect with the themes of suffering and hope in new and contradictory ways for BRCA-positive patients with late-stage disease. The paper argues that a BRCA mutation is not only central to the political economy of hope but takes on a more materialist nature as it becomes an embodied practice that moves in and beyond the clinic.