ABSTRACT
Medical genetics services, like many clinical specialisms, are engaged simultaneously in the production of medical classifications or diagnoses, and the management of patient identities. Clinical work, such as is often glossed as ‘decision-making’, is therefore embedded in a broader repertoire of moral and sentimental work. The moral and sentimental order of the genetics clinic can be especially significant: the identification of an inherited, genetically-based medical condition has potential impact on social relationships of family and kinship; inherited medical problems can place in question the moral worth of parents; the diagnosis of a genetic condition can place in hazard the identity of a child. In the course of this chapter, therefore, we explore some features of this moral and sentimental work. The organisational context is a genetics clinic in the United Kingdom, and the particular focus is a variety of inherited syndromes that give rise to abnormal physical development and mental impairment. We explore how clinicians and parents co-construct the allocation of moral worth, individual and family identities in the context of clinical encounters. There is now a substantial body of research examining the impact on
clinical services of new genetic technologies, in particular the work of genetic counselling. The scope of this chapter does not permit a comprehensive review of this work (for overviews of the literature see: EversKiebooms and van Den Berghe 1979; Biesecker 2001; Pilnick and Dingwall 2001; Wang et al. 2004). Areas of interest have understandably included the process outcomes of counselling: recall of information, patient satisfaction, predictive testing decisions and reproductive choices following counselling (Black 1980; Somer et al. 1988; Shiloh et al. 1990; Michie et al. 1994; Michie et al. 1996; Michie et al. 1997; Bernhardt et al. 2000; Collins et al. 2001; Barr and Millar 2003). Recently, there has been increased emphasis on the psychological dimensions of the clinical encounter (see, e.g., Kessler 1997; McConkie-Rosell and Sullivan 1999), the extent to which the principle of non-directive counselling is achieved (Elwyn et al. 2000) and the experience of counselling from the patient
perspective (Hallowell and Murton 1998; Collins et al. 2001; Skirton 2001). Here, however, we are not concerned with the efficacy of counselling, nor with the interpersonal distribution of the genetic ‘information’ that is imparted on such occasions (see Featherstone et al. 2006 for a discussion of the latter topic). More widely, the experience of parents who have a child with a dis-
ability or spoiled appearance has been a focus for research since the early 1970s (Brett 2002). Within that research tradition there exists an extensive literature examining the stigmatised identities of children with a disability. More precisely, parents’ perceptions of stigma have been described for a range of conditions. Some focus on what Goffman (1968) terms ‘discredited’ individuals, in whom difference can be identified through their appearance. These include conditions such as craniofacial disorders (Hanus et al. 1981), Down’s syndrome (van Riper et al. 1992; Prussing et al. 2005) and obesity in children (Latner and Stunkard 2003). Additionally, there are a number of studies examining families with ‘discreditable’ (Goffman 1968) members, where behavioural characteristics, although not immediately apparent, are potential threats to children’s – and parents’ – identities. These include disorders of developmental coordination (Segal et al. 2002) and epilepsy (Carlton-Ford et al. 1997). Studies have also examined parental coping mechanisms for ‘courtesy stigma’ (Goffman 1968), acquired as a result of a family relationship with a stigmatised individual, and one’s identity potentially spoiled by association (see, e.g., Birenbaum 1992; Gray 2002; Norvilitis et al. 2002; Green 2003; McKeever and Miller 2004). We draw particularly on this body of work in this chapter, in the course of our discussion of parental perceptions of stigma and the sentimental work performed in the genetics clinic. These issues are of particular significance in the context of dysmorphology and medical genetics. We introduce the background to dysmorphology in the next section.
