Literature DB >> 25497725

What binds biosociality? The collective effervescence of the parent-led conference.

Rebecca Dimond1, Andrew Bartlett2, Jamie Lewis2.   

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.
Copyright © 2014 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  22q11 deletion syndrome; Biosociality; Ceremonial order; Collective effervescence; Conferences; Rare disease community; United Kingdom

Mesh:

Year:  2014        PMID: 25497725     DOI: 10.1016/j.socscimed.2014.12.005

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  2 in total

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Authors:  Neil Stephens; Jamie Lewis
Journal:  Qual Res       Date:  2017-04-13

2.  Systematic scoping review of the concept of 'genetic identity' and its relevance for germline modification.

Authors:  Floor M Goekoop; Carla G van El; Guy A M Widdershoven; Nadza Dzinalija; Martina C Cornel; Natalie Evans
Journal:  PLoS One       Date:  2020-01-24       Impact factor: 3.240

  2 in total

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