The challenges and potential solutions of achieving meaningful consent amongst research participants in northern Thailand: a qualitative study
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Published:2023-12-19
Issue:1
Volume:24
Page:
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ISSN:1472-6939
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Container-title:BMC Medical Ethics
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language:en
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Short-container-title:BMC Med Ethics
Author:
Greer Rachel C,Kanthawang Nipaphan,Roest Jennifer,Perrone Carlo,Wangrangsimakul Tri,Parker Michael,Kelley Maureen,Cheah Phaik Yeong
Abstract
Abstract
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. A thematic analysis was conducted.
Results
Our analysis identified four interrelated themes surrounding participants’ ability to give consent: varying degrees of research understanding, limitations of using informal translators, issues impacting decisions to join research, and voluntariness of consent. Suggestions for achieving more meaningful consent included the use of formal translators and community engagement with research populations.
Conclusions
Participant’s agency in decision making to join research should be supported, but research information needs to be communicated to potential participants in a way that they can understand. We found that improved understanding about the study and its potential benefits and harms goes beyond literacy or translation and requires attention to social and cultural factors.
Funder
Wellcome Trust and MRC Newton Fund Collaborative Award
Wellcome Trust Strategic Award
NIHR Oxford Biomedical Research Centre
Wellcome Trust
Publisher
Springer Science and Business Media LLC
Subject
Health Policy,Health (social science),Issues, ethics and legal aspects
Reference46 articles.
1. Chiang Rai Highland People Development Center. The number of highland people by tribe and citizenship status. 2023.
2. United Nations High Commissioner for Refugees. Statelessness [cited 2023 31/01/23]. Available from: https://www.unhcr.org/th/en/statelessness.
3. Herberholz C. Protracted statelessness and nationalitylessness among the Lahu, Akha and Tai-Yai in northern Thailand: Problem areas and the vital role of health insurance status. The Economics of Peace and Security Journal; Vol 15, No 2 (2020)DO – 1015355/epsj15236. 2020.
4. Apidechkul T, Laingoen O, Suwannaporn S. Inequity in Accessing Health Care Service in Thailand in 2015: a case study of the Hill Tribe people in Mae Fah Luang District, Chiang Rai, Thailand. J Health Res. 2016;30(1):67–71.
5. Pesses A. Highland Birth and Citizenship Registration in Thailand. Final report on Karen Focus Group Discussions in Chiang Mai Province. UNESCO; 2007.