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重视身高:诊断、评估与特发性身材矮小病例。

Valuing height: diagnosis, valuation and the case of idiopathic short stature.

机构信息

Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, Oxford, UK.

出版信息

Sociol Health Illn. 2019 Mar;41(3):502-516. doi: 10.1111/1467-9566.12828. Epub 2018 Nov 16.

Abstract

This paper proposes a 'valuographic' approach to diagnosis, exploring how values and valuation practices are implicated in the contested diagnostic category of idiopathic short stature (ISS). ISS describes children who are 'abnormally' short but do not have any other detectable pathology. In the USA growth-promoting hormone therapy has been approved for ISS children, since 2003. However, no other jurisdiction has approved this treatment and the value of ISS as a diagnostic category remains disputed among healthcare professionals. Drawing on qualitative interviews with paediatric endocrinologists in the UK and the US, this study presents a historical snapshot illustrating how the problematisation of ISS as a diagnosis involved multiple registers of value including epistemic, economic and moral calculations of worth. Contestation of the diagnosis was not just about what counts but about what ought to be counted, as respondents' accounts of ISS gave differential weight to a range of types of evidence and methods of assessment. Ultimately what was at stake was not just the value of increased height for short patients, but what it meant to properly practice paediatric endocrinology. Consideration is then given to how a valuographic approach can be applied to sociological studies of diagnosis more broadly.

摘要

本文提出了一种“价值论”的诊断方法,探讨了价值观和评估实践如何涉及特发性身材矮小症(ISS)这一有争议的诊断类别。ISS 描述的是身高“异常”矮小但没有任何其他可检测到的病理的儿童。自 2003 年以来,生长激素治疗已获准用于 ISS 儿童。然而,没有其他司法管辖区批准这种治疗,ISS 作为一个诊断类别仍然在医疗保健专业人员中存在争议。本研究通过对英国和美国儿科内分泌学家的定性访谈,提供了一个历史快照,说明了 ISS 作为一种诊断的问题化如何涉及到多个价值领域,包括认识论、经济和道德价值的计算。对诊断的争议不仅涉及到什么是重要的,还涉及到什么应该被计算在内,因为受访者对 ISS 的描述对一系列类型的证据和评估方法给予了不同的权重。最终,问题不仅在于矮小患者身高增加的价值,还在于正确实践儿科内分泌学的意义。随后考虑了如何更广泛地将价值论方法应用于诊断的社会学研究。

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