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dc.contributor.author
Millum, Joseph
dc.contributor.author
Campbell, Megan
dc.contributor.author
Luna, Florencia
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dc.contributor.author
Malekzadeh, Arianne
dc.contributor.author
Karim, Quarraisha Abdool
dc.date.available
2020-10-05T16:50:54Z
dc.date.issued
2019-04
dc.identifier.citation
Millum, Joseph; Campbell, Megan; Luna, Florencia; Malekzadeh, Arianne; Karim, Quarraisha Abdool; Ethical challenges in global health-related stigma research; BioMed Central; Bmc Medicine; 17; 1; 4-2019; 1-9
dc.identifier.issn
1741-7015
dc.identifier.uri
http://hdl.handle.net/11336/115433
dc.description.abstract
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 literatura 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.format
application/pdf
dc.language.iso
eng
dc.publisher
BioMed Central
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dc.rights
info:eu-repo/semantics/openAccess
dc.rights.uri
https://creativecommons.org/licenses/by/2.5/ar/
dc.subject
CONFIDENTIALITY
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DE-NORMALIZATION
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ETHICS
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GLOBAL HEALTH
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PRIVACY
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RESEARCH ETHICS
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RESEARCH RISKS
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STIGMA
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VULNERABILITY
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Ética Médica
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dc.subject.classification
Ciencias de la Salud
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CIENCIAS MÉDICAS Y DE LA SALUD
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dc.title
Ethical challenges in global health-related stigma research
dc.type
info:eu-repo/semantics/article
dc.type
info:ar-repo/semantics/artículo
dc.type
info:eu-repo/semantics/publishedVersion
dc.date.updated
2020-09-11T19:43:01Z
dc.journal.volume
17
dc.journal.number
1
dc.journal.pagination
1-9
dc.journal.pais
Reino Unido
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dc.journal.ciudad
Londres
dc.description.fil
Fil: Millum, Joseph. National Institutes of Health; Estados Unidos
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Fil: Campbell, Megan. University of Cape Town; Sudáfrica
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Fil: Luna, Florencia. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Facultad Latinoamericana de Ciencias Sociales; Argentina
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Fil: Malekzadeh, Arianne. National Institutes of Health; Estados Unidos
dc.description.fil
Fil: Karim, Quarraisha Abdool. Universidad de KwaZulu-Natal; Sudáfrica
dc.journal.title
Bmc Medicine
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dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/url/https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-019-1317-6
dc.relation.alternativeid
info:eu-repo/semantics/altIdentifier/doi/http://dx.doi.org/10.1186/s12916-019-1317-6
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