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Experiential knowledge of disability, impairment and illness : the reproductive decisions of families genetically at risk
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Boardman, Felicity K. (2014) Experiential knowledge of disability, impairment and illness : the reproductive decisions of families genetically at risk. Health: Interdisciplinary Journal for the Social Study of Health, Illness & Medicine, Volume 18 (Number 5). pp. 476-492. doi:10.1177/1363459313507588 ISSN 1363-4593.
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WRAP_Boardman_0970314-mg-260813-experiential_knowledge_of_disability_impairment_and_illness.pdf - Submitted Version Download (684Kb) | Preview |
Official URL: http://dx.doi.org/10.1177/1363459313507588
Abstract
As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that ‘experiential knowledge of disability’ plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes ‘experiential knowledge of disability’ and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of ‘disability’, ‘embodied experiences of impairment’ or ‘embodied experiences of illness, death and bereavement’ are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching ‘experiential knowledge of disability’ within these contexts which are able to account for the various contours of the embodied lived reality of life with ‘disability’.
| Item Type: | Journal Article | ||||||
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| Subjects: | B Philosophy. Psychology. Religion > BF Psychology R Medicine > R Medicine (General) R Medicine > RG Gynecology and obstetrics |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Reproductive health, Families -- Health and hygiene, Genetics, Sociology of disability, Human chromosome abnormalities -- Diagnosis | ||||||
| Journal or Publication Title: | Health: Interdisciplinary Journal for the Social Study of Health, Illness & Medicine | ||||||
| Publisher: | Sage Publications Ltd. | ||||||
| ISSN: | 1363-4593 | ||||||
| Official Date: | September 2014 | ||||||
| Dates: |
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| Volume: | Volume 18 | ||||||
| Number: | Number 5 | ||||||
| Page Range: | pp. 476-492 | ||||||
| DOI: | 10.1177/1363459313507588 | ||||||
| Status: | Peer Reviewed | ||||||
| Publication Status: | Published | ||||||
| Access rights to Published version: | Restricted or Subscription Access | ||||||
| Funder: | Economic and Social Research Council (Great Britain) (ESRC) | ||||||
| Grant number: | PTA-031-2005-00137 |
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