撒哈拉以南非洲地区数据密集型健康研究中的知情同意理解与处理:多语言视角下的挑战与机遇
Understanding and processing informed consent during data-intensive health research in sub-Saharan Africa: challenges and opportunities from a multilingual perspective.
作者信息
Omutoko Lillian, Chingarande George Rugare, Botes Marietjie, Moyana Farayi, Singh Shenuka, Jaoko Walter, Sevene Esperança, Mtande Tiwonge K, Edwin Ama Kyerewaa, Matandika Limbanazo, Burgess Theresa, Moodley Keymanthri
机构信息
University of Nairobi, Kenya.
National Institutes of Health, Stellenbosch University, South Africa.
出版信息
Res Ethics. 2025 Jul;21(3):503-518. doi: 10.1177/17470161241274809. Epub 2024 Sep 26.
Africa has a colonial past that renders it a linguistic melting pot, where language is not only important for communication but is inextricably related to cultural identity. In Africa, there are over 2000 languages that are still being used and spoken. Language diversity coupled with cultural diversity may affect the process of obtaining informed consent in data-intensive research. We explore some of the challenges and opportunities of multilingualism in handling informed consent in the context of data-intensive research. In multilingual contexts, as in most African countries, language is exceptionally central, and translation has potential cultural, social, historical, functional and scientific importance. However, it is recognised that terminological and translation activities may not always be cost-effective or feasible. We consider alternative mechanisms of harmonisation of data-related terminology and concepts in multilingual contexts, such as iconography, graphic elicitation and other multimedia formats of information sharing. The inclusion of visual or multimedia explanations in informed consent forms can improve comprehension, enhance information transfer and learning, reduce potential vulnerabilities associated with low literacy levels or the inability to interpret technical language associated with data-intensive research, build trust with participants and their communities, and promote autonomy of potential participants. We recognise that the inclusion of visual or multimedia content to facilitate information transfer is only one component of the informed consent process for data-intensive research. Research ethics committees (RECs) should be mindful of other key considerations and challenges of informed consent for data-intensive research in sub-Saharan Africa (SSA), and to explore whether these alternative forms of consent are ethical and effective in multilingual contexts.
非洲有着殖民历史,这使其成为一个语言熔炉,在那里语言不仅对交流很重要,而且与文化身份有着千丝万缕的联系。在非洲,仍有2000多种语言在使用和被人们说。语言多样性与文化多样性相结合,可能会影响数据密集型研究中获得知情同意的过程。我们探讨了在数据密集型研究背景下处理知情同意时多语言带来的一些挑战和机遇。在多语言环境中,就像大多数非洲国家一样,语言格外重要,翻译具有潜在的文化、社会、历史、功能和科学重要性。然而,人们认识到术语和翻译活动可能并不总是具有成本效益或可行的。我们考虑在多语言环境中协调与数据相关的术语和概念的替代机制,如图像、图形启发和其他多媒体信息共享形式。在知情同意书中纳入视觉或多媒体解释可以提高理解、增强信息传递和学习、减少与低识字水平或无法解释与数据密集型研究相关的技术语言相关的潜在脆弱性、与参与者及其社区建立信任,并促进潜在参与者的自主性。我们认识到纳入视觉或多媒体内容以促进信息传递只是数据密集型研究知情同意过程的一个组成部分。研究伦理委员会(RECs)应该关注撒哈拉以南非洲(SSA)数据密集型研究知情同意的其他关键考虑因素和挑战,并探讨这些替代形式的同意在多语言环境中是否符合伦理且有效。
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