Paper short abstract:

This paper stems from fieldwork conducted with a thalassaemia patients association in Cyprus. I argue that if patient narratives of hope and hopelessness are to acquire pragmatic potency, they must be articulated in a political context of deliberation and contestation.

Paper long abstract:

This paper stems from fieldwork conducted with a thalassaemia patients association in Cyprus. Thalassaemia is a chronic blood disorder which due to genetic and ecological factors has a high prevalence in countries situated around the mediterranean basin. The paper focuses on the technology of gene therapy and patient expectations of therapeutic finality. Albeit still in an experimental stage, if successful gene therapy has the potential of providing a final cure to thalassaemia patients around the world. At the same time, such expectations have been perpetually deferred because of unsuccessful clinical trials. Using Byron Good's (1994) theory on the pragmatics of narrative, I explore how narratives of hope and hopelessness are differently articulated in political and non-political registers. I make the case that if scientific and also patient narratives of hope and hopelessness are to acquire pragmatic potency, they must be situated and articulated in a political context of deliberation and contestation. In return, by acquiring political relevance, narrative is granted the capacity of enacting, rather than simply contemplating the future.