Turcotte-Tremblay Anne-Marie, Mc Sween-Cadieux Esther
University of Montreal Public Health Research Institute, Montreal, Canada.
University of Montreal School of Public Health, Montreal, Canada.
BMC Med Ethics. 2018 Jun 15;19(Suppl 1):45. doi: 10.1186/s12910-018-0279-0.
Researchers studying health systems in low-income countries face a myriad of ethical challenges throughout the entire research process. In this article, we discuss one of the greatest ethical challenges that we encountered during our fieldwork in West Africa: the difficulty of protecting the confidentiality of participants (or groups of participants) while locally disseminating results of health systems research to stakeholders.
This reflection is based on experiences of authors involved in conducting evaluative research of interventions aimed at improving health systems in West Africa. Our observation and collaboration with the research projects' stakeholders informed our analysis. Examples from two research projects illustrate the issues raised.
We found that in some cases there is a risk that local stakeholders may be able to identify research participants, or at least groups of participants, during the dissemination of results, even if they are anonymized. Four factors can interact and influence this challenge: 1) hierarchical structure, 2) small milieu, 3) immersion in a few sites, and 4) vested interests of decision-makers. For example, local stakeholders can sometimes find out when and where the data were collected. Moreover, health systems, especially rural healthcare centres, in West African countries can be small settings, so people often know each other. Some types of participants have unique characteristics or positions in the health system that may make them more easily identifiable by local stakeholders familiar with the environment. We identified a number of potential strategies that can help researchers minimize this difficulty and improve ethical research practices. These strategies pertain to the development of the study design, the process of obtaining informed consent, the dissemination of results, and the researchers' reflexivity.
Researchers must develop and adopt strategies that enable them to respect their promise of confidentiality while effectively disseminating sometimes sensitive results. Reflections surrounding ethical issues in global health research should be deepened to better address how to manage competing ethical responsibilities while promoting valuable research uptake.
研究低收入国家卫生系统的研究人员在整个研究过程中面临着无数的伦理挑战。在本文中，我们讨论了我们在西非实地考察期间遇到的最大伦理挑战之一：在向利益相关者本地传播卫生系统研究结果时，保护参与者（或参与者群体）的机密性存在困难。
本反思基于参与对旨在改善西非卫生系统的干预措施进行评估研究的作者的经验。我们对研究项目利益相关者的观察和合作促成了我们的分析。两个研究项目的例子说明了所提出的问题。
我们发现，在某些情况下，即使对结果进行了匿名处理，在结果传播过程中，当地利益相关者仍有可能识别出研究参与者，或者至少识别出参与者群体。有四个因素可以相互作用并影响这一挑战：1）等级结构，2）小环境，3）集中在少数几个地点，4）决策者的既得利益。例如，当地利益相关者有时可以查明数据收集的时间和地点。此外，西非国家的卫生系统，尤其是农村医疗中心，规模较小，人们往往相互认识。某些类型的参与者在卫生系统中具有独特的特征或地位，这可能使熟悉该环境的当地利益相关者更容易识别他们。我们确定了一些潜在策略，可帮助研究人员将这一困难降至最低，并改进伦理研究实践。这些策略涉及研究设计的制定、获得知情同意的过程、结果的传播以及研究人员的反思性。
研究人员必须制定并采用策略，使他们能够在有效传播有时敏感的结果的同时，履行对保密的承诺。应加深对全球卫生研究伦理问题的反思，以更好地应对如何在促进有价值的研究成果应用的同时，管理相互冲突的伦理责任。
