Research ethics in context: understanding the vulnerabilities, agency and resourcefulness of research participants living along the Thai–Myanmar border

Abstract

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.

Spotlight on global health research

“…What it means to be vulnerable and the importance of including a broad range of communities in clinical trials is the focus of the research conducted by Khirikoekkong et al 8 on the Thai-Myanmar border. The authors show us how and why the design of clinical trials must be adapted to enable vulnerable communities to participate.…”

Under the Mask: A Film on Tuberculosis at the Thai-Myanmar Border

“…We also confirmed with our previous findings in a qualitative study that migrants experience particular barriers to seeking diagnosis and treatment due to their legal status, transportation challenges, and lack of finances ( 12 ). To come to the clinic for testing, daily wage migrants lose the day's income ( 12 , 15 ). Undocumented migrants fear being stopped by the police, an incident that may see them face deportation ( 14 , 15 , 30 ).…”

“…SMRU has a core engagement team with extensive experience in engaging with local communities on both sides of the border. The team have used multiple engagement approaches including consultation with community advisory boards ( 29 – 31 ), using science-art approaches ( 21 ), and participatory visual methods ( 15 ).…”

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“…These two determinants may play a combined role in exposing migrants to a high risk of precarity: distance worsens safety through impractical and ooded tracks and leads to high travel-related costs, while absence of legal status raises security concerns when travelling in areas surrounded by various military and paramilitary groups 38,39 . In addition, having no legal status is a barrier to secure stable employment, and undocumented migrants are not protected by law nor able to exercise their rights while living and working in Thailand 40 . Health services were apparently diverse on the Thai-Myanmar border but their distribution heterogeneous.…”