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

Authors: Kelly Raspberry - Kelly Raspberry received her Ph.D. from the Department of Anthropology at the University of North Carolina-Chapel Hill. She currently lives in Buenos Aires, Argentina, where she is conducting research on how global reproductive and genetic technologies are localized in practice. Her research interests also include the ethical and social implications of medical and clinical genetics in the United States. She may be reached at CB # 3115, Chapel Hill, NC 27599-3115. E-mail: kraspberry@yahoo.coma; Debra Skinner - Debra Skinner is a Senior Scientist at the FPG Child Development Institute, University of North Carolina-Chapel Hill. She is also an Adjunct Associate Professor in the Department of Anthropology at UNC-CH. Her current research focuses on sociocultural implications of genetic testing and diagnosis, specifically for young children and their families, genetic identity, and family adaptations to and understandings of genetic disorders. Her publications are listed at http://www.fpg.unc.edu/people/search_people.cfm?staffID = 87. She may be reached at CB # 8180, 105 Smith Level Road, Chapel Hill, NC 27599-8180. E-mail: skinner@mail.fpg.unc.edub
Affiliations:   a Department of Anthropology at the University of North Carolina-Chapel Hill,
b FPG Child Development Institute, University of North Carolina-Chapel Hill,
DOI: 10.1080/01459740701619848
Publication Frequency: 4 issues per year
Published in: journal Medical Anthropology, Volume 26, Issue 4 October 2007 , pages 355 - 391
Formats available: HTML (English) : PDF (English)
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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.
Keywords: body; clinic practice; genetics; genetic identity; kin relations
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