By contributing to a context- and practice-centred research, I intend to explore the life-worlds of young people with genetic disorders, some of which are marked by ‘dysmorphic’ features. By placing particular emphasis on young people as key actors in (rare) syndrome research, the study aims to explore the way(s) young people experience, live and deploy their self in the making while being exposed and involved – wittingly or not – in highly different social formations and shifting contexts. What is of particular interest in all this is both the sociological understanding about how young people experiencing a ‘genetic syndrome’ are challenged in different social settings and relations, that is the clinic, the home and beyond home, and paying closer attention to how bodily features as well as biological relatedness affect their identity and sense of self.
Selected recent publications
PourGashtasbi, G. 2015. Nanotoxicology and challenges of translation. In: Nanomedicine, 10 (20), 3121-3129.