Motivations for seeking experimental treatment in Japan

Abstract

In this article on innovative medical treatment for serious conditions in Japan, we aim to revise two widespread notions: first, that people living with severe conditions are all waiting for a cure or are impatient to try out experimental treatment, in particular regenerative medicine. Showing that motivations for cure seeking are complex and linked to somatic identity, we argue that gaining a cure also means a new social normality, which for some people narrows the only normality that is meaningful to them; and, second, that people living with a serious (latent) condition necessarily define their lives as not normal in the light of normalisation. People with a condition conceptualise normal life variously and multiply in the light of both individual and collective experiences. The two revisions are crucial to attempts at understanding what makes people seek experimental medicine. Comparing the narratives of people with four different conditions - spinal cord injury, Duchenne muscular dystrophy, Diabetes Mellitus type 1 and cardiovascular disease - it becomes clear that the difference between seeking treatment or not largely depends on somatic identities; rather than through notions of (ab)normality, it is more adequately understood in terms of the experience of somatic lacking and wholeness.