Re-imagining patient narrative: exploring patient experience of genetic medicine through art practice

I contend that art practice can critique and have an impact on the expectation and form of the patient narrative of genetic medicine, as promoted and experienced in medical contexts, and this is proposed as a contribution to knowledge. My second – methodological – contribution lies in the expansion of autoethnography to include autobiographical art practice to amplify possibilities for insight and new understanding. I construct and reflect upon my patient narrative as an artist and carrier of the CDH1 genetic mutation, associated primarily with Hereditary Diffuse Gastric Cancer. Art practice is proposed as a means of documenting, articulating, and analysing patient experience of genetic diagnosis and preventative surgery. Art works are employed to examine the relation between genetic diagnosis and patient narrative, with attention to the CDH1 genetic mutation. The discourse and structure of patient narrative are considered, questioning if current definitions accommodate the complex relation between genetic diagnosis and patient narrative. I trace the historical emergence of patient narrative (the means by which a selfidentifying patient or family member articulates personal experience of illness), examining dominant ideas in the field of patient narrative: biographical disruption, narrative reconstruction, and the sociologist Arthur Frank’s typologies of illness narrative. I explore Frank’s ideal illness narrative – the quest narrative – in my own quest, led by art practice, to locate my stomach. Contextualising my work in this field, I construct new ways to explore my patient experience through art practice, challenging existing models that fail to reveal what it means to be a patient of genetic medicine. Autoethnography is both a research methodology and outcome, informed by my experience. The work of others enhances my understanding of different approaches to narrative, providing models for addressing patient narrative in a meaningful way. Readings of two films by Jean-Luc Godard, Passion (1982) and Scénario du film ‘Passion’ (1982), and Dora García’s film The Joycean Society (2013) provide a framework for my practical experimentation as I discover narrative elements to explore through production. Recognising the experimental potential of narrative formation, I work with movement, rhythm, reflection, opacity, focus, emplotment, sequence, editing, fragment, sound, staging, framing, light, and documentation, investigating narrative forms – sonic, haptic, performed, embodied, book, digital – and singular, dialogic, and multiple narratives.