Ethical challenges in global health-related stigma research

dc.contributor.authorMillum, Joseph
dc.contributor.authorCampbell, Megan
dc.contributor.authorLuna, Florencia
dc.contributor.authorMalekzadeh, Arianne
dc.contributor.authorKarim, Quarraisha A
dc.date.accessioned2019-06-10T09:25:59Z
dc.date.available2019-06-10T09:25:59Z
dc.date.issued2019-04-29
dc.date.updated2019-05-05T03:34:30Z
dc.description.abstractBackground 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.
dc.identifier.apacitationMillum, J., Campbell, M., Luna, F., Malekzadeh, A., & Karim, Q. A. (2019). Ethical challenges in global health-related stigma research. <i>BMC Medicine</i>, http://hdl.handle.net/11427/30198en_ZA
dc.identifier.chicagocitationMillum, Joseph, Megan Campbell, Florencia Luna, Arianne Malekzadeh, and Quarraisha A Karim "Ethical challenges in global health-related stigma research." <i>BMC Medicine</i> (2019) http://hdl.handle.net/11427/30198en_ZA
dc.identifier.citationMillum, J., Campbell, M., Luna, F., Malekzadeh, A., & Karim, Q. A. (2019). Ethical challenges in global health-related stigma research. BMC medicine, 17(1), 84.
dc.identifier.ris TY - AU - Millum, Joseph AU - Campbell, Megan AU - Luna, Florencia AU - Malekzadeh, Arianne AU - Karim, Quarraisha A AB - 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. DA - 2019-04-29 DB - OpenUCT DP - University of Cape Town J1 - BMC Medicine KW - Stigma KW - Ethics KW - Global health KW - Research ethics KW - Vulnerability KW - De-normalization KW - Research risks KW - Confidentiality KW - Privacy LK - https://open.uct.ac.za PY - 2019 T1 - Ethical challenges in global health-related stigma research TI - Ethical challenges in global health-related stigma research UR - http://hdl.handle.net/11427/30198 ER - en_ZA
dc.identifier.urihttps://doi.org/10.1186/s12916-019-1317-6
dc.identifier.urihttp://hdl.handle.net/11427/30198
dc.identifier.vancouvercitationMillum J, Campbell M, Luna F, Malekzadeh A, Karim QA. Ethical challenges in global health-related stigma research. BMC Medicine. 2019; http://hdl.handle.net/11427/30198.en_ZA
dc.language.rfc3066en
dc.rights.holderThe Author(s).
dc.sourceBMC Medicine
dc.source.urihttps://bmcmedicine.biomedcentral.com/
dc.subjectStigma
dc.subjectEthics
dc.subjectGlobal health
dc.subjectResearch ethics
dc.subjectVulnerability
dc.subjectDe-normalization
dc.subjectResearch risks
dc.subjectConfidentiality
dc.subjectPrivacy
dc.titleEthical challenges in global health-related stigma research
dc.typeJournal Article
Files
Original bundle
Now showing 1 - 1 of 1
Loading...
Thumbnail Image
Name:
12916_2019_Article_1317.pdf
Size:
1.15 MB
Format:
Adobe Portable Document Format
Description:
License bundle
Now showing 1 - 1 of 1
Loading...
Thumbnail Image
Name:
license.txt
Size:
0 B
Format:
Item-specific license agreed upon to submission
Description:
Collections