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Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants’ vulnerabilities, agency, resourcefulness and sources of support. METHODS: We und...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7651704/ https://www.ncbi.nlm.nih.gov/pubmed/33165549 http://dx.doi.org/10.1093/inthealth/ihaa052 |
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author | Khirikoekkong, Napat Jatupornpimol, Nattapat Nosten, Suphak Asarath, Supa-at Hanboonkunupakarn, Borimas McGready, Rose Nosten, Francois Roest, Jennifer Parker, Michael Kelley, Maureen Cheah, Phaik Yeong |
author_facet | Khirikoekkong, Napat Jatupornpimol, Nattapat Nosten, Suphak Asarath, Supa-at Hanboonkunupakarn, Borimas McGready, Rose Nosten, Francois Roest, Jennifer Parker, Michael Kelley, Maureen Cheah, Phaik Yeong |
author_sort | Khirikoekkong, Napat |
collection | PubMed |
description | BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants’ vulnerabilities, agency, resourcefulness and sources of support. METHODS: We undertook qualitative research around two clinical studies involving migrant women living along the Thai–Myanmar border. We conducted 32 in-depth interviews and 10 focus group discussions with research participants, families, researchers and key informants. RESULTS: We found that being ‘undocumented’ is at the core of many structural vulnerabilities, reflecting political, economic, social and health needs. Although migrant women lead challenging lives, they have a support network that includes family, employers, community leaders, non-governmental organisations and research networks. Migrant women choose to participate in research to access quality healthcare, gain knowledge and obtain extra money. However, research has the potential to exacerbate existing vulnerabilities, such as the burdens of cross-border travel, foregoing work and being more visible as migrants. CONCLUSIONS: Our study confirms that research is important to provide evidence-based care and was viewed by participants as offering many benefits, but it also has hidden burdens. Migrant women exercised agency and resourcefulness when navigating challenges in their lives and research participation. |
format | Online Article Text |
id | pubmed-7651704 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-76517042020-11-17 Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border Khirikoekkong, Napat Jatupornpimol, Nattapat Nosten, Suphak Asarath, Supa-at Hanboonkunupakarn, Borimas McGready, Rose Nosten, Francois Roest, Jennifer Parker, Michael Kelley, Maureen Cheah, Phaik Yeong Int Health Original Article BACKGROUND: Research ethics guidelines set a high bar for conducting research with vulnerable populations, often resulting in their exclusion from beneficial research. Our study aims to better characterise participants’ vulnerabilities, agency, resourcefulness and sources of support. METHODS: We undertook qualitative research around two clinical studies involving migrant women living along the Thai–Myanmar border. We conducted 32 in-depth interviews and 10 focus group discussions with research participants, families, researchers and key informants. RESULTS: We found that being ‘undocumented’ is at the core of many structural vulnerabilities, reflecting political, economic, social and health needs. Although migrant women lead challenging lives, they have a support network that includes family, employers, community leaders, non-governmental organisations and research networks. Migrant women choose to participate in research to access quality healthcare, gain knowledge and obtain extra money. However, research has the potential to exacerbate existing vulnerabilities, such as the burdens of cross-border travel, foregoing work and being more visible as migrants. CONCLUSIONS: Our study confirms that research is important to provide evidence-based care and was viewed by participants as offering many benefits, but it also has hidden burdens. Migrant women exercised agency and resourcefulness when navigating challenges in their lives and research participation. Oxford University Press 2020-11-09 /pmc/articles/PMC7651704/ /pubmed/33165549 http://dx.doi.org/10.1093/inthealth/ihaa052 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Original Article Khirikoekkong, Napat Jatupornpimol, Nattapat Nosten, Suphak Asarath, Supa-at Hanboonkunupakarn, Borimas McGready, Rose Nosten, Francois Roest, Jennifer Parker, Michael Kelley, Maureen Cheah, Phaik Yeong Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
title | Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
title_full | Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
title_fullStr | Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
title_full_unstemmed | Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
title_short | Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border |
title_sort | research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the thai–myanmar border |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7651704/ https://www.ncbi.nlm.nih.gov/pubmed/33165549 http://dx.doi.org/10.1093/inthealth/ihaa052 |
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