Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.
Experience as knowledge: Disability, distillation and (reprogenetic) decision-making.
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DOI：
10.1016/j.socscimed.2017.09.013
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发表时间：
2017-10
期刊：
影响因子：
--
通讯作者：
Boardman FK
中科院分区：
文献类型：
--
作者：
Boardman FK
“经验知识”越来越被认为是对生殖决策的重要影响。“残疾经验知识”尤其是产前检测/筛查背景下的重要资源，使未来的父母能够想象和评估未来受残疾影响的生活。然而，“经验知识”的概念因其特质、无常性以及因此而被认为不如（医学）知识而受到广泛批评。本文通过分析经验知识在生育决策中的构成和使用，探讨了经验知识的一些关键批评。17名患有脊髓性肌萎缩症（SMA）或家族中患有SMA的英国居民妇女参加了两次深入采访：一次是在2007-9年，另一次是在2013-4年。通过比较和对比这些妇女的帐户在两个时间点，本文展示了SMA的“生活经验”（与条件下的生活的内脏日常现实）和各种方式（S）这种经验转化为，并提出了“知识”，通过决策和会计的过程中，生殖决策之间的鲜明对比。分析强调，多个，不同的，有时竞争的经验框架被用来概念化SMA跨时间和背景。然而，这一发现并没有证明它的不可靠性，而是强调了“知识”是一个不合适的容器，用来捕捉和传递“经验知识”。相反，我们需要考虑的是，如何以一种既能利用洞察力内在力量，又不会让它容易受到被贴上“知识”标签所吸引的认识论批评的方式来评价这种洞察力。
‘Experiential knowledge’ is increasingly recognised as an important influence on reproductive decision-making. ‘Experiential knowledge of disability’ in particular is a significant resource within prenatal testing/screening contexts, enabling prospective parents to imagine and appraise future lives affected by disability. However, the concept of ‘experiential knowledge’ has been widely critiqued for its idiosyncrasy, its impermanence and consequently its perceived inferiority to (medical) knowledge. This paper explores some of these key critiques of experiential knowledge through an analysis of its constitution and uses in the context of reproductive decision-making. Seventeen UK-resident women with Spinal Muscular Atrophy (SMA), or with SMA in their family, took part in two in-depth interviews: one in 2007–9 and the other in 2013–4. By comparing and contrasting these women’s accounts at two time points, this paper demonstrates the stark contrast between ‘lived experience’ of SMA (the visceral everyday realities of life with the condition) and the various way(s) this experience was transformed into, and presented as, ‘knowledge’ through the processes of making, and accounting, for reproductive decisions. The analysis highlights that multiple, distinct and sometimes competing experiential frameworks are used to conceptualise SMA across time and context. However, rather than evidence of its fallibility, this finding highlights that ‘knowledge’ is an inappropriate vessel with which to capture and transfer ‘experiential knowledge’. Rather, we need to consider how to value such insight in ways that harnesses its inherent strength without leaving it vulnerable to the epistemological critiques attracted by labelling it ‘knowledge’.
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DOI：
10.1089/gte.2007.0057
发表时间：
2008-03-01
期刊：
GENETIC TESTING
影响因子：
--
作者：
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通讯作者：
Wilson, Brenda
影响因子：
2.1
作者：
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通讯作者：
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影响因子：
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作者：
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通讯作者：
d'Agincourt-Canning, Lori
影响因子：
3.2
作者：
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通讯作者：
Wyke, Sally
影响因子：
3.2
作者：
Ahmed, Shenaz;Bryant, Louise;Hewison, Jenny
通讯作者：
Hewison, Jenny