The Rights of Participation and the Realities of Inclusion

Abstract

As suggested in the introductory chapter, there has been a growth in academic literature that documents children’s increasing inclusion in research and highlights their agency in terms of competency and knowledge (see, for example, Corsaro 1997; Haugen 2008; MacNaughton et al. 2007). Studies have also illustrated ways in which children are quite capable of making informed decisions about own lives: their medical treatment (Alderson and Montgomery 1996), living with terminal illness (Bluebond-Langner 1978), responding to their parent’s divorce (Smart et al. 2001) and talking about their own experiences of disability (Stalker and Connors 2003). While much emphasis has been placed on children’s rights of participation in research, we believe that there is little evidence that scrutinises the ways in which their inclusion becomes a reality. This chapter presents the reader with personal ethical stories that makes the messy business of inclusion and gaining informed consent more transparent.