TY - JOUR
T1 - Research ethics in context
T2 - Understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border
AU - Khirikoekkong, Napat
AU - Jatupornpimol, Nattapat
AU - Nosten, Suphak
AU - Asarath, Supa At
AU - Hanboonkunupakarn, Borimas
AU - McGready, Rose
AU - Nosten, Francois
AU - Roest, Jennifer
AU - Parker, Michael
AU - Kelley, Maureen
AU - Cheah, Phaik Yeong
N1 - Publisher Copyright:
© The Author(s) 2020. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. 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.
PY - 2020/11/9
Y1 - 2020/11/9
N2 - 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.
AB - 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.
KW - Agency
KW - Consent
KW - Migrants
KW - Pregnant women
KW - Research ethics
KW - Vulnerability
UR - https://www.scopus.com/pages/publications/85095968863
UR - https://www.scopus.com/inward/citedby.url?scp=85095968863&partnerID=8YFLogxK
U2 - 10.1093/inthealth/ihaa052
DO - 10.1093/inthealth/ihaa052
M3 - Article
C2 - 33165549
AN - SCOPUS:85095968863
SN - 1876-3413
VL - 12
SP - 551
EP - 559
JO - International health
JF - International health
IS - 6
ER -