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“提高每个人的机会”:干细胞捐献者招募患者诉求中的叙述和媒体,以及纠正种族不平等的工作。

'Improving the odds for everybody': Narrative and media in stem cell donor recruitment patient appeals, and the work to redress racial inequity.

机构信息

Department of Sociological Studies, University of Sheffield, Sheffield, UK.

出版信息

Sociol Health Illn. 2022 Jul;44(7):1114-1131. doi: 10.1111/1467-9566.13505. Epub 2022 Aug 5.

Abstract

Stem cell registries, which provide cells for transplants in blood malignancy treatment, recruit donors partly through mobilising narrative. This is often via appeals from patients without matching donors who seek to encourage registrations from people who might go on to be their own, or somebody else's, donor. Registries have also historically underserved racially minoritised communities, who are less likely to locate matching donors. As such, appeals often come from racially minoritised patients. Prior research highlights the importance of narrative in health contexts, and donation in particular. However, the impact of stories on those telling them is underexplored. This article fills this gap, providing analysis of a range of interview, media and documentary data. It sketches out the contours of appeal work, showing how patients' private lives become publicly exposed. It highlights how appeals might be understood as collective action on behalf of racially minoritised communities, flagging how those most affected by inequity often become central to the fight to redress it. Through this, the article extends an emergent 'sociology of donation', arguing for acknowledgement of media's importance in contemporary donation contexts.

摘要

干细胞注册机构为血液恶性肿瘤治疗中的移植提供细胞,部分通过动员叙事来招募捐赠者。这通常是通过没有匹配供体的患者的呼吁来实现的,他们试图鼓励那些可能成为自己或他人供体的人进行注册。注册机构在历史上也没有为少数族裔社区提供服务,这些社区找到匹配供体的可能性较小。因此,呼吁往往来自少数族裔患者。先前的研究强调了叙事在健康背景下的重要性,特别是在捐赠方面。然而,故事对讲述者的影响还没有得到充分的探索。本文填补了这一空白,提供了对一系列访谈、媒体和纪录片数据的分析。它勾勒出呼吁工作的轮廓,展示了患者的私人生活如何公开曝光。它强调了呼吁如何可以被理解为代表少数族裔社区的集体行动,并指出那些受不平等影响最大的人往往成为纠正不平等的斗争的核心。通过这一点,本文扩展了新兴的“捐赠社会学”,主张承认媒体在当代捐赠背景下的重要性。

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