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De-SequencingIdentity Work with Genes
Type of publication
Development of Personalized Health in Switzerland: Social Sciences Perpectives
Springer Singapore, Singapore
Chronic inflammatory bowel diseases (IBD) have recently been re-shaped as clinical conditions with a genetically determined susceptibility, adding genetic factors to the explanation of chronic autoimmune conditions of ultimately unknown origin. This shift emerged from the predominance of molecular and genetic approaches in the life sciences and resulted in a drastic reconfiguration of IBDs: from a psychosomatic device, to a multifactorial collage of symptoms within the episteme of genetic susceptibility. IBD patients born in the 1960s, 1970s, or 1980s, have been socialised within the psychosomatic paradigm, yet in the contemporary medical system they have to cope with genetic explanations. Against this backdrop, this chapter asks two questions. The first is of a phenomenological nature: How do patients and their families make sense of the shift within the aetiology of their disease in their individual lifeworlds? The second question has a more analytical focus: How can their experience at the intersections of embodiment, social configurations, and molecular genetics enrich the interdisciplinary program of ‘de-sequencing’?