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

ABSTRACT 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.


Available from: Kelly Raspberry, Sep 02, 2014
1 Follower
  • Source
  • [Show abstract] [Hide abstract]
    ABSTRACT: This article reviews changing perspectives in recent social science research into families of children with intellectual disability. These latest trends emphasise family resilience, adaptation, and transformation, with the focus predominantly on mothers and their ability to psychologically adjust to their caring challenges. A concern is that by concentrating on the adaptive strategies of mothers, researchers risk minimising the socio-political dimensions of this experience. The theme of the ‘good mother’ figures strongly in this research, linked to the limiting socio-cultural narratives available to mothers of children with intellectual disability that, it is argued, may condone their continuing marginalisation.
    Disability & Society 07/2013; 28(5). DOI:10.1080/09687599.2012.732540 · 0.73 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Diagnosis in paediatric genetics involves a combination of technologies able to display variation in DNA and clinical discussions with families that concentrate on retrieving family histories. This paper explores the significance of the family tales that genetics brings to the fore. Through discussion of an ESRC-funded ethnographic study of families referred to a paediatric genetic service, the paper explores how genetics and family history intersect in ‘relations of exchange’ (Latimer, 2013). It draws from sociological work on family that emphasizes the importance of narrative to the formation and maintenance of family ties and the importance of broader social contexts to the kinds of stories that can be told and recognized by others. The paper emphasizes the significance of claims to respectability and value to the narratives people provide of family ties; particularly in contexts where such ties, in the past or the present, are thought of as ‘troubling’. Making reference to research by Skeggs and Loveday (2012), it is argued that an important narrative that is drawn upon, in order to claim respectability, is that of being a good parent who protects their children from socially ‘risky relations’ so that a positive future as a ‘subject of value’ may be possible.
    Sociological Review 12/2014; DOI:10.1111/1467-954X.12223 · 0.57 Impact Factor