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The role of experiential knowledge in the reproductive decision making of families genetically at risk : the case of spinal muscular atrophy
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Boardman, Felicity K. (2010) The role of experiential knowledge in the reproductive decision making of families genetically at risk : the case of spinal muscular atrophy. PhD thesis, University of Warwick.
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Official URL: http://webcat.warwick.ac.uk/record=b2482435~S15
Abstract
This study reports on the analysis of 59 in-depth interviews conducted with
people diagnosed with, or from families affected by, Spinal Muscular Atrophy
(SMA). It focuses on attitudes towards, and actual uses of, prenatal testing
and selective termination for SMA in reproductive decision making for this
group of people, in order to focus on the role of experiential knowledge of
SMA and its relationship to expert medical knowledge, within these highly
complex decisions.
Experiential knowledge has been described in the literature as knowledge
derived from experience, whether ‘embodied’ (i.e. sensory) or ‘empathetic’
(i.e. based on the experiences of others). Experiential knowledge has
frequently been positioned as being in opposition to, or even conflicting with,
medical knowledge, particularly by feminists and disability rights supporters,
for whom the tensions between experiential knowledge and medical
knowledge have political significance. However, this research found the
relationship between expert and experiential knowledge to be both fluid and
dynamic, which had important implications for the way in which SMA was
conceptualised, understood and responded to by families living with it.
Whilst participants’ accounts of SMA were thoroughly grounded in their day-to-day realities with the condition, this knowledge always existed in and
through a relationship with expert medical knowledge of SMA.
The inherent uncertainties within and between experiential and expert
knowledge, and the ways of conceptualising SMA that emerged from them,
however, rather than alleviating, instead contributed to, and heightened, some
of the social, ethical and moral dilemmas these families experienced around
reproductive decision making. Indeed, many participants became trapped
within these ways of knowing SMA and the internal contradictions they
contained, whilst for others, the strategic privileging of one form of
knowledge as ‘authentic’ over the other became the only way to escape some
of these dilemmas, and clarify where their reproductive responsibilities lay.
Item Type: | Thesis (PhD) | ||||
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Subjects: | R Medicine > RC Internal medicine R Medicine > RG Gynecology and obstetrics |
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Library of Congress Subject Headings (LCSH): | Spinal muscular atrophy, Prenatal diagnosis, Abortion, Experiential learning | ||||
Official Date: | July 2010 | ||||
Dates: |
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Institution: | University of Warwick | ||||
Theses Department: | Department of Sociology | ||||
Thesis Type: | PhD | ||||
Publication Status: | Unpublished | ||||
Supervisor(s)/Advisor: | Bradby, Hannah, 1966- ; Throsby, Karen, 1968- ; Charles, Nickie | ||||
Sponsors: | Economic and Social Research Council (Great Britain) (ESRC) (PTA-031-2005-00137) | ||||
Extent: | 381 leaves : ill. | ||||
Language: | eng |
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