Experiencing the Genetic Body: Parents' Encounters with Pediatric Clinical Genetics

Department of Anthropology, University of North Carolina-Chapel Hill, Chapel Hill, NC 27599-3115, USA.
Medical Anthropology (Impact Factor: 1.88). 10/2007; 26(4):355-91. DOI: 10.1080/01459740701619848
Source: PubMed


Because of advancements in genetic research and technologies, the clinical practice of genetics is becoming a prevalent component of biomedicine. As the genetic basis for more and more diseases are found, it is possible that ways of experiencing health, illness, identity, kin relations, and the body are becoming geneticized, or understood within a genetic model of disease. Yet, other models and relations that go beyond genetic explanations also shape interpretations of health and disease. This article explores how one group of individuals for whom genetic disorder is highly relevant formulates their views of the body in light of genetic knowledge. Using data from an ethnographic study of 106 parents or potential parents of children with known or suspected genetic disorders who were referred to a pediatric genetic counseling and evaluation clinic in the southeastern United States, we find that these parents do, to some degree, perceive of their children's disorders in terms of a genetic body that encompasses two principal qualities: a sense of predetermined health and illness and an awareness of a profound historicity that reaches into the past and extends into the present and future. They experience this genetic body as both fixed and historical, but they also express ideas of a genetic body made less deterministic by their own efforts and future possibilities. This account of parents' experiences with genetics and clinical practice contributes to a growing body of work on the ways in which genetic information and technologies are transforming popular and medical notions of the body, and with it, health, illness, kinship relations, and personal and social identities.

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Available from: Kelly Raspberry, Sep 02, 2014
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    • "However, it is important to pause and place paediatric genetics within its social and cultural context, in particular, to recognise the multiple ways in which categories of the ‘acceptable person’ are produced (Landsman 2003, Carsten 2004, Kittay 2006, Raspberry and Skinner 2007, Fitzgerald 2008). While medicine can be a factor in dynamics of stigmatisation and othering, this does not occur in a context-free vacuum. "
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    ABSTRACT: Paediatric genetics is increasingly playing a role in explorations of why a child may not be reaching developmental milestones, while experiencing various health concerns and displaying unusual physical characteristics. The diagnostic processes include close analyses of a child's body in order to identify 'clues' to possible genetic variation. When the genetic variation identified is new and complex there is significant uncertainty about what relationship that variation has to childhood development and what it will mean for a child's future. This paper, drawing from an ethnographic study of a genetics clinic, explores what versions of childhood difference and normality are produced by genetic explorations marked by uncertainty. The focus is on the significance of visual dynamics within the consultation, in family stories or photographs, and in the images found on websites which catalogue genetic syndromes. Our argument is that inside and outside the clinic the visual interpretations create understandings of the child that at times position him or her as 'other', while at other times recognise the child as normal and 'one of us'. The uncertainty embedded in identifying rare genetic variations enables multiple interpretations to emerge which do not 'fix' the child into the category of the 'genetically other'.
    Full-text · Article · Nov 2011 · Sociology of Health & Illness
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    • "Many were aware of their family history but were unsure of how to incorporate that along with social context (lifestyle). Genetic knowledge was continually lived and interpreted within their social contexts and is consistent with past research (Svendsen 2006, Raspberry & Skinner 2007). Clarke and Heyman (1998) similarly argue that a lay response to expert science involves an active construction suggesting there is more to risk perception than considering technical information. "
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    ABSTRACT: lindsay s (2010) Journal of Nursing and Healthcare of Chronic Illness 2, 135–143 Exploring the role of family history and lay understanding of genetics on the self-management of disease Aims and objectives. This project drew a sample from coronary heart disease registries (n = 108) to explore how people incorporate knowledge of lay genetics and family history of a disease to manage their health. Questionnaires and focus groups were analysed to explore whether having a family history of coronary heart disease (CHD) influenced how patients’ self-managed their health. Background. Although evidence suggests that genes have an important influence on susceptibility to many diseases, little is known about how people use this knowledge to manage their health. Most research on lay perceptions of genetic causes of disease focuses on people at risk of particular genetic condition, rather than on those who already have a disease. Results. Four key themes emerged from the data that people used to understand their heart disease while incorporating family history in different ways including: (1) being ‘doomed’ because of bad genes; (2) not wanting to change health behaviours; (3) wanting to be careful and lead a healthy lifestyle because of a known family history of heart disease and (4) uncertainty of the role of family history in heart disease. Conclusions. Knowledge of family history of the disease influenced how people experienced health and was inherently embedded within social context to shape new meanings of health. Implications for practice. The recommendations based on this research are to encourage health care providers to develop an understanding of patients’ conception of how their disease was caused so they can give them advice that will fit within their framework. It is important to understand the different ways in which patients conceptualise and respond to their illness.
    Full-text · Article · May 2010 · Journal of Nursing and Healthcare of Chronic Illness
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    • "Fisher and Goodley (2007) show that in interpreting 'the other' (in the sense of Landsman 2003, quoted above) parents creatively appropriate medical knowledge, as well as directly challenge conceptions of normality to resist the pessimistic teleology of the medical narrative. Raspberry and Skinner (2007) argue that biogenetic discourses become the new frame within which the 'normality' of a different but still valuable child is constructed. Parents assert the uniqueness and individuality of their child (Whitmarsh et al. 2007) and may use the ambiguity of medical constructions in order to achieve this (Whitmarsh et al. 2007). "
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    ABSTRACT: This paper analyses 12 parent interviews to investigate the stigmatisation of parents of children diagnosed with an autism spectrum disorder. Drawing on poststructural accounts of the relationship between knowledge and subjectivity, the stigma concept is critically interrogated in order to address previous individualistic constructions of stigmatisation and to place stigma within the power dynamics of social control. The results of the study indicate that a child's diagnosis with an autism spectrum disorder (ASD) is critical for parents to resist stigmatisation. Parents experienced considerable enacted stigma, but successfully resisted felt stigma by deploying medical knowledge to articulate unspoiled subject positions. The institutionalisation of medical knowledge within the autism community was critical to this process. Resistance to enacted stigma was successful to the degree that medical constructions of deviance deployed by parents were accepted by others, notably those in power within institutions. It is concluded that poststructural accounts of subjectivity and social control provide a useful way of conceptualising stigmatisation. An acceptance of the painful nature of stigma as lived experience co-exists with an emphasis on the constantly negotiated nature of embodied subjectivity as a contingent social process to illustrate the conditions for active resistance to stigmatisation.
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