Publications by authors named "Jennifer Roest"

Background: Achieving meaningful consent can be challenging, particularly in contexts of diminished literacy, yet is a vital part of participant protection in global health research.

Method: We explored the challenges and potential solutions of achieving meaningful consent through a qualitative study in a predominantly hill tribe ethnic minority population in northern Thailand, a culturally distinctive population with low literacy. Semi-structured interviews were conducted with 37 respondents who had participated in scrub typhus clinical research, their family members, researchers and other key informants.

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Despite advances, international research ethics guidelines still tend to consist of high-level ethical principles reflecting residual influence from North American and European traditions of ethics. Local ethics committees and community advisory boards can offer more culturally-sensitive approaches to training but most institutions lack substantive practical ethics guidance to engage rich moral understandings in day-to-day research practice in diverse cultural contexts. To address this gap, we conducted an international series of qualitative research ethics case studies, linked prospectively to active research programs in diverse settings.

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Despite advances in theory, often driven by feminist ethicists, research ethics struggles in practice to adequately account for and respond to the agency and autonomy of people considered vulnerable in the research context. We argue that shifts within feminist research ethics scholarship to better characterise and respond to autonomy and agency can be bolstered by further grounding in discourses from the social sciences, in work that confirms the complex nature of human agency in contexts of structural and other sources of vulnerability. We discuss some of the core concepts and critiques emerging from the literature on women and children's agency in under-resourced settings, highlighting calls to move from individualistic to relational models of agency, and to recognise the ambiguous, value-laden, and heterogeneous nature of the concept.

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Background: Researchers have a responsibility to protect all participants, especially vulnerable participants, from harm. Vulnerability is increasingly understood to be context specific, yet limited guidance is available regarding the vulnerability and agency of research participants in different cultural settings. This study aims to explore research participants' daily vulnerability and agency, and how these interact with participants' research experiences in their own words.

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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.

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