Clinical Center Department of Bioethics, National Institutes of Health, 10/1C118, 10 Center Drive, Bethesda, MD, 20892, USA.
Fogarty International Center, National Institutes of Health, 31 Center Dr, Bethesda, MD, 20892, USA.
BMC Med. 2019 Apr 29;17(1):84. doi: 10.1186/s12916-019-1317-6.
It 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.
At 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.
Research 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.
对污名化状况进行研究、将经历污名化的边缘化群体纳入其中，以及开发减少污名化的干预措施至关重要。然而，此类研究在伦理方面具有挑战性。尽管人们经常提到这些广泛认可的挑战，但很少有出版物专门关注污名化群体或状况研究中的伦理问题。事实上，简短的文献回顾仅发现了两篇此类出版物。
在最近一次由来自美国和中低收入国家的 60 名污名化研究人员参加的减少污名化科学研讨会上，突显了对更有力和批判性地讨论研究伦理的需求。在本文中，我们通过案例描述、说明和批判性地审查了关键的伦理挑战，这些挑战更有可能因研究重点是与健康相关的污名化问题或涉及污名化群体或状况而出现。我们从两个角度探讨了这项研究的伦理问题。首先，从过度保护的角度出发，我们讨论了污名化的观念如何阻碍伦理研究、不尊重研究参与者，并缩小研究问题。其次，从研究风险的角度出发，我们考虑了对污名化人群进行研究如何会无意中造成伤害。与研究参与者相关的研究伤害包括潜在的机密泄露和污名化的加剧。潜在的伤害还延伸到第三方，包括可能因研究结果传播而受到影响的家庭和人群。
对污名化群体和污名化状况进行的研究不应因不必要或不适当的保护措施而受阻。然而，它可能比其他健康研究带来不同且更大的风险。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这些风险。
