Paper short abstract:

This presentation discusses the limits and possibilities of genomics becoming global by analysing narratives of scientists and Duchenne Muscular Dystrophy patients on genetic therapies in Japan. I ask: to what extent do ‘local’ socio-cultural conditions affect practices of genetic therapies?

Paper long abstract:

Globally, genomics research is expected to enhance the health of patients with serious and intractable diseases, including Duchenne Muscular Dystrophy (DMD). But to what extent do ‘local’ socio-cultural conditions affect the application of genome therapies?

Since the 1990s, number of clinical trials for DMD have been organized, among them a genetic therapy, exon skipping, and genetic testing for DMD has gained much attention. In both cases, Japan’s ‘locality’ is of relevance. On the one hand, Japanese scientists use the ‘Japanese genome’ to develop genetic therapies, as ‘Japanese bodies are unique’.  This is one reason that Japanese scientists initiate their own studies.

On the other hand, field research shows that DMD patients are not enthusiastic about genetic therapies developed in Japan or elsewhere. The dilemma for DMD patients is that even though they might want to be cured, to comply with the scientific research on offer to be cured might mean to go along with a belief in Japanese superior and unique bodies, which forms the basis of eugenics, and is silently alive in scientific practices. Japan’s eugenic history of patients with genetic disorders being sterilized is still felt. This dilemma might keep patients from engaging with genetic therapies.

In my paper I discuss the limits and possibilities of genomics becoming global from the perspective of therapeutic applications.