Organized ambivalence: when sickle cell disease and stem cell research converge
Organized ambivalence: when sickle cell disease and stem cell research converge
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DOI：
10.1080/13557858.2011.552710
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发表时间：
2011-01-01
影响因子：
3.1
通讯作者：
Benjamin, Ruha
中科院分区：
文献类型：
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作者：
Benjamin, Ruha
目标。本文分析了镰状细胞患者家庭对干细胞移植招募工作的反应。它确定了为什么镰状细胞患者家庭没有以其他患者群体的速度进行干细胞移植的关键因素。它通过考察诊所每天产生的不信任的社会性，并在更广泛的健康投资政治中得到强化，挑战了传统上对“非裔美国人的不信任”的关注，这是一种基于对过去虐待行为的集体记忆并投射到当前倡议中的一套态度。它借鉴了一项为期两年的多地点人种学研究，这是一项总部位于美国的干细胞研究和治疗计划。实地调查工作包括对一个州干细胞机构的参与者观察，一个公共资助的干细胞移植项目，一个镰刀细胞诊所，以及对照顾者和干细胞研究利益相关者的半结构化、开放式采访，所有这些都需要进行定性分析。结果和启示。本文发现，矛盾心理由三个背景因素构成：临床治疗的不确定性，医疗保健和医学研究的制度化融合，以及围绕科学和医疗投资的政治竞争。这篇论文认为，有组织的矛盾心理是对个性化的不信任概念的一种分析替代，并作为实施更具参与性的研究倡议的框架，这些倡议更好地解释了再生医学的多重不确定性特征。
Objective. This article analyzes sickle cell patient families' responses to stem cell transplant recruitment efforts. It identifies key dynamics that explain why sickle cell patient families are not undergoing stem cell transplants at the rate of other patient populations. It challenges the conventional focus on 'African-American distrust' as a set of attitudes grounded in collective memories of past abuses and projected on to current initiatives, by examining the sociality of distrust produced daily in the clinic and reinforced in broader politics of health investment.Design. It draws upon a two-year multi-sited ethnography of a US-based stem cell research and cures initiative. Fieldwork included participant observation in a state stem cell agency, a publicly-funded stem cell transplant program, a sickle cell clinic, and semi-structured, open-ended interviews with caregivers and stem cell research stakeholders, all of which were subject to qualitative analysis.Findings and implications. This paper finds ambivalence-in-action structured by three contextual strands: therapeutic uncertainties of the clinic, institutionalized conflation of healthcare and medical research, and political contests over scientific and medical investments. The paper posits that organized ambivalence is an analytic alternative to individualized notions of distrust and as a framework for implementing more participatory research initiatives that better account for the multiple uncertainties characteristic of regenerative medicine.