title: What binds biosociality? The collective effervescence of the parent-led conference.
abstract: Questions of community are central to many research settings in the social sciences. Rabinow argued that, in the wake of the Human Genome Project, an increasingly important form of collectivity would be biosociality. Biosociality recognises a central role for biomedical knowledge in constructing genetic identities and producing and reproducing social relationships. Accordingly, it is often imagined as a new form of social solidarity. We draw on observations of parent-led conferences to explore the way in which biosociality is expressed at events organised around a particular genetic syndrome - 22q11 deletion syndrome. The parent-led conferences took place within the United Kingdom between 2007 and 2010 and were observed as part of a multi-sited ethnographic study. By bringing together a geographically dispersed group of people together within the same physical location, conferences offer an ideal platform to empirically examine sociality. Durkheim used the term collective effervescence to describe the collective expression of heightened emotion. We suggest that in the case of the 22q11 deletion syndrome activities discussed in this paper, collective effervescence is a mechanism through which individuals become a collective. We argue that parent-led conferences gather individuals in one location on the basis of common biological factors, but it is the shared emotional experience of being together that consolidates and renews the connection between members.
authors.affiliation: Cardiff School of Social Sciences, Cardiff University, 10 Museum Place, Cardiff CF10 3BG, United Kingdom. Electronic address: DimondR1@Cardiff.ac.uk.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Dimond
authors.affiliation: Cardiff School of Social Sciences, Cardiff University, 10 Museum Place, Cardiff CF10 3BG, United Kingdom.
authors.forename: Andrew
authors.initials: A
authors.lastname: Bartlett
authors.affiliation: Cardiff School of Social Sciences, Cardiff University, 10 Museum Place, Cardiff CF10 3BG, United Kingdom.
authors.forename: Jamie
authors.initials: J
authors.lastname: Lewis
mesh_terms: D058165:22q11 Deletion Syndrome / Q000523:psychology*; D003226:Congresses as Topic; D006801:Humans; D033183:Interdisciplinary Communication; D009769:Object Attachment; D010290:Parents / Q000523:psychology*; D035583:Rare Diseases / Q000235:genetics / Q000523:psychology; D012657:Self-Help Groups; D012951:Socialization; D006113:United Kingdom
keywords: 22q11 deletion syndrome; Biosociality; Ceremonial order; Collective effervescence; Conferences; Rare disease community; United Kingdom