Genomics and cure : understanding narratives of patients with Duchenne muscular dystrophy in Japan

vrijdag 25 mei 2018 13:30 - 15:00

Colloquium APH (former EMGO+ ) research group Community Genetics

Genomics and cure: understanding narratives of patients with Duchenne muscular dystrophy in Japan - Masae Kato PhD

Research associate at University of Sussex and International Institute of Social Studies The Hague, (part of Erasmus University Rotterdam)
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Globally, genomics research is expected to improve the health of patients with intractable diseases such as Duchenne muscular dystrophy (DMD). Since the 1990s, a number of clinical trials for patients of DMD have been organised in many places around the world, including Japan.

Despite ongoing global clinical trials, however, field research shows that the DMD patients the author encountered were neither enthusiastic nor well informed about gene therapies developed in Japan or elsewhere. Why not? The author observed that the desire for a cure among DMD patients is not self-evident, but is framed by sociocultural conditions surrounding the patients, the local history of discrimination against genetic disorders, and the way care is organised.
See also: https://www.ncbi.nlm.nih.gov/pubmed/29533090

Location: Room H161, Medical Faculty, VUmc, Van der Boechorststraat 7, Amsterdam

Visitors from outside VUMC/AMC are also welcome!

Please send an email to Mrs. Wilma IJzerman to register

For more information: Carla van El, T: 020-4448867

www.vumc.com/researchcommunitygenetics

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