DFF (FP1): "Genetic hauntings - Pre-patient illness narratives in the era of direct-to-consumer genetic testing"

The project Genetic hauntings (GH) explores how the introduction and dissemination of easily available genetic self-testing technology creates new experiences and narratives of disturbed health that fundamentally complicates the temporal, relational and agential dimensions of illness. GH investigates the 'pre-patient narratives' and experiences of two key user group of DIY tests: 1) individuals with family legacies of serious illness and 2) biohackers who engrain gene tests in practices of optimising the body. To understand the temporal, narrative and relational complexity of these users’ illness experiences the project introduces the theoretical framework of ‘health hauntology’, which is developed in order to grasp how illness is increasingly felt and narrated as ‘present’ despite the lack of a diagnosis and/or symptoms. GH sheds light on this new and increasingly important cultural condition where illnesses are narrated and experienced in a pre-symptomatic and pre-diagnostic realm.