College of Health Sciences, University of Ghana, Korle-Bu, P. O. Box KB 143, Accra, Ghana.
BMC Med Ethics. 2021 Jul 23;22(1):98. doi: 10.1186/s12910-021-00659-7.
Researchers conducting community-based participatory action research (CBPAR) in highly collectivistic and socioeconomically disadvantaged community settings in sub-Saharan Africa are confronted with the distinctive challenge of balancing universal ethical standards with local standards, where traditional customs or beliefs may conflict with regulatory requirements and ethical guidelines underlying the informed consent (IC) process. The unique ethnic, socioeconomic, and cultural diversities in these settings have important implications for the IC process, such as individual decisional autonomy, beneficence, confidentiality, and signing the IC document.
Drawing on insights and field observations from conducting CBPARs across several rural, highly communal, low literate, and low-income communities in Ghana, we discuss some theoretical, ethico-cultural, and methodological challenges associated with applying the universal, Western individualistic cultural value-laden IC process in sub-Saharan Africa. By citing field situations, we discuss how local cultural customs and the socioeconomic adversities prevalent in these settings can influence (and disrupt) the information disclosure process, individual decisional authority for consent, and voluntariness. We review the theoretical assumptions of the Declaration of Helsinki's statement on IC and discuss its limitations as an ultimate guide for the conduct of social science research in the highly communal African context. We argue that the IC process in these settings should include strategies directed at preventing deception and coercion, in addition to ensuring respect for individual autonomy. We urge Universities, research institutions, and institutional review boards in Africa to design and promote the use of context-appropriate ethical IC guidelines that take into consideration both the local customs and traditional practices of the people as well as the scientific principles underpinning the universal IC standards.
We recommend that, rather than adopt a universal one-size-fits-all IC approach, researchers working in the rural, highly collectivistic, low literate, socioeconomically disadvantaged settings of sub-Saharan Africa should deeply consider the roles and influence of cultural values and traditional practices on the IC and the research process. We encourage researchers to collaborate with target communities and stakeholders in the design and implementation of context-appropriate IC to prevent ethics dumping and safeguard the integrity of the research process.
在撒哈拉以南非洲高度集体主义和社会经济处于不利地位的社区环境中进行基于社区的参与式行动研究（CBPAR）的研究人员面临着独特的挑战，即需要平衡普遍的伦理标准与当地标准，因为传统习俗或信仰可能与监管要求和知情同意（IC）过程背后的伦理准则相冲突。这些环境中的独特种族、社会经济和文化多样性对 IC 过程具有重要影响，例如个人决策自主权、善行、保密性和签署 IC 文件。
我们借鉴了在加纳几个农村、高度集体化、低识字率和低收入社区进行 CBPAR 的经验和实地观察，讨论了在撒哈拉以南非洲应用普遍的、西方个人主义文化价值观的 IC 过程所涉及的一些理论、伦理文化和方法挑战。通过引用实地情况，我们讨论了当地文化习俗和这些环境中普遍存在的社会经济劣势如何影响（和破坏）信息披露过程、同意的个人决策权力和自愿性。我们审查了《赫尔辛基宣言》中关于 IC 的声明的理论假设，并讨论了其作为指导高度集体化的非洲背景下社会科学研究的最终指南的局限性。我们认为，在这些环境中，IC 过程除了确保尊重个人自主权外，还应包括旨在防止欺骗和胁迫的策略。我们敦促非洲的大学、研究机构和机构审查委员会设计和推广考虑到当地习俗和人民传统做法以及普遍 IC 标准所依据的科学原则的切合实际的 IC 伦理准则。
我们建议，在撒哈拉以南非洲农村、高度集体化、低识字率、社会经济处于不利地位的环境中工作的研究人员，而不是采用普遍的一刀切的 IC 方法，应深入考虑文化价值观和传统习俗对 IC 和研究过程的作用和影响。我们鼓励研究人员与目标社区和利益攸关方合作，设计和实施切合实际的 IC，以防止伦理倾销并维护研究过程的完整性。
