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.

Download full-text


Available from: Kelly Raspberry, Sep 02, 2014
1 Follower
  • Source
    [Show abstract] [Hide abstract]
    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 diseaseAims 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.
    Journal of Nursing and Healthcare of Chronic Illness 05/2010; 2(2):135 - 143. DOI:10.1111/j.1752-9824.2010.01052.x
  • Source
    [Show abstract] [Hide abstract]
    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.
    Sociology of Health & Illness 08/2009; 31(7):1011-27. DOI:10.1111/j.1467-9566.2009.01174.x · 1.88 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.
    Mental Retardation and Developmental Disabilities Research Reviews 01/2007; 13(4):302-12. DOI:10.1002/mrdd.20170 · 3.80 Impact Factor