Ethical challenges in global health-related stigma research
Ethical challenges in global health-related stigma research
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DOI：
10.1186/s12916-019-1317-6
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发表时间：
2019-04-29
期刊：
影响因子：
9.3
通讯作者：
Karim, Quarraisha Abdool
中科院分区：
文献类型：
--
作者：
Millum, Joseph;Campbell, Megan;Karim, Quarraisha Abdool
研究背景对污名化状况进行研究，包括经历污名化的边缘化群体，并制定干预措施以减少污名化至关重要。然而，这种研究在伦理上是具有挑战性的。虽然经常肤浅地提到这些广泛承认的挑战，但很少有出版物在研究被污名化的群体或条件时关注伦理问题。事实上，一个简短的文献回顾发现只有两个这样的出版物。Main text在最近的一个由来自美国和低收入和中等收入国家的60名污名研究人员参加的减少污名科学研讨会上，强调了对研究伦理进行更有力和批判性讨论的必要性。在本文中，我们描述，通过案例说明，并严格审查关键的道德挑战，更有可能出现，因为一项研究的重点是健康相关的耻辱或涉及污名化的群体或条件。我们从两个角度来审视这项研究的伦理问题。首先，通过过度保护的透镜，我们讨论了污名的看法如何阻碍伦理研究，不尊重研究参与者，并缩小研究问题。第二，通过研究风险的透镜，我们考虑如何与污名化人群的研究可以无意中造成伤害。对参与者的研究相关伤害包括潜在的违反保密性和加剧耻辱感。潜在的危害还延伸到第三方，包括家庭和人口谁可能会受到影响的传播research result.ConclusionsResearch与污名化的人群和污名化的条件不应该受到不必要的或不适当的保护措施。然而，它可能带来不同于其他健康研究的更大风险。研究人员和研究伦理委员会必须特别关注这些风险以及如何管理它们。
BackgroundIt is critically important to conduct research on stigmatized conditions, to include marginalized groups that experience stigma, and to develop interventions to reduce stigma. However, such research is ethically challenging. Though superficial reference is frequently made to these widely acknowledged challenges, few publications have focused on ethical issues in research on stigmatized groups or conditions. In fact, a brief literature review found only two such publications.Main textAt a recent Science of Stigma Reduction workshop comprising 60 stigma researchers from the USA and low and middle-income countries, the need for more robust and critical discussion of the ethics of the research was highlighted. In this paper we describe, illustrate through cases, and critically examine key ethical challenges that are more likely to arise because a research study focuses on health-related stigma or involves stigmatized groups or conditions. We examine the ethics of this research from two perspectives. First, through the lens of overprotection, where we discuss how the perception of stigma can impede ethical research, disrespect research participants, and narrow the research questions. Second, through the lens of research risks, where we consider how research with stigmatized populations can unintentionally result in harms. Research-related harms to participants include potential breaches of confidentiality and the exacerbation of stigma. Potential harms also extend to third parties, including families and populations who may be affected by the dissemination of research results.ConclusionsResearch with stigmatized populations and on stigmatized conditions should not be impeded by unnecessary or inappropriate protective measures. Nevertheless, it may entail different and greater risks than other health research. Investigators and research ethics committees must be particularly attentive to these risks and how to manage them.