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Ethical challenges in global health-related stigma research
BACKGROUND: 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...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6487527/ https://www.ncbi.nlm.nih.gov/pubmed/31030670 http://dx.doi.org/10.1186/s12916-019-1317-6 |
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author | Millum, Joseph Campbell, Megan Luna, Florencia Malekzadeh, Arianne Karim, Quarraisha Abdool |
author_facet | Millum, Joseph Campbell, Megan Luna, Florencia Malekzadeh, Arianne Karim, Quarraisha Abdool |
author_sort | Millum, Joseph |
collection | PubMed |
description | BACKGROUND: 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. MAIN TEXT: 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. CONCLUSIONS: 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. |
format | Online Article Text |
id | pubmed-6487527 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-64875272019-06-05 Ethical challenges in global health-related stigma research Millum, Joseph Campbell, Megan Luna, Florencia Malekzadeh, Arianne Karim, Quarraisha Abdool BMC Med Correspondence BACKGROUND: 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. MAIN TEXT: 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. CONCLUSIONS: 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. BioMed Central 2019-04-29 /pmc/articles/PMC6487527/ /pubmed/31030670 http://dx.doi.org/10.1186/s12916-019-1317-6 Text en © The Author(s). 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Correspondence Millum, Joseph Campbell, Megan Luna, Florencia Malekzadeh, Arianne Karim, Quarraisha Abdool Ethical challenges in global health-related stigma research |
title | Ethical challenges in global health-related stigma research |
title_full | Ethical challenges in global health-related stigma research |
title_fullStr | Ethical challenges in global health-related stigma research |
title_full_unstemmed | Ethical challenges in global health-related stigma research |
title_short | Ethical challenges in global health-related stigma research |
title_sort | ethical challenges in global health-related stigma research |
topic | Correspondence |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6487527/ https://www.ncbi.nlm.nih.gov/pubmed/31030670 http://dx.doi.org/10.1186/s12916-019-1317-6 |
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