Tackling ethical issues and dilemmas in community-based participatory research: a practical resource

该项目将召集来自4个现有互联社区（CC）项目的社区合作伙伴和学者参加一个研讨会和小型工作组，就社区参与性研究（CBPR）中的伦理问题交流想法和经验，并制定指导和学习材料。该项目将得到来自5个国家的国际顾问和国家公众参与协调中心（NCCPE）作为合作伙伴的支持。最近，人们对CBPR的兴趣越来越大，即研究解决与地点、利益和身份社区有关的问题，并使受影响的人参与规划、开展、传播和使用研究。通常采用这种方法是为了让通常是研究对象的人对研究过程有更大的控制权，将研究技能融入社区并增加研究影响。CBPR方法被认为在“难以接触”社区的背景下以及在敏感问题的研究中特别有用。CBPR中出现了许多伦理挑战——特别是与专业研究人员的权力、社区成员和研究人员之间界限的模糊以及机构结构（包括大学研究伦理委员会）在应对不可预测性和复杂的伙伴关系安排方面缺乏灵活性有关。目的：加深对CBPR中复杂的伦理问题和挑战的理解，并在英国的一系列环境和学科领域中制定伦理指导、案例研究和实践练习，以供未来的CC和其他研究项目使用。1)对所有CC项目中已发表的研究结果中的伦理问题进行快速审查，并对4个现有CC项目进行详细综合。2)与一系列利益相关者进行对话，包括来自项目的社区合作伙伴，国际顾问和NCCPE，以确定进一步的道德问题，分享和分析道德问题以及解决这些问题的方法。3)制作一份文件和基于网络的材料，提供与CBPR相关的伦理指导、案例研究、案例示例以及评论和学习材料。4)鼓励改进机构研究伦理审查、政策、程序、培训和支持，以考虑到CBPR的挑战和复杂性。5)提高大学和社区研究人员以及其他利益相关者对CBPR伦理问题的认识/改进实践。该项目将1)最终确定“道德行为准则”，该准则将由目前的达勒姆CC项目起草。2)制作4个案例研究，每个案例都以不同的CBPR项目为特色，以书面形式展示道德原则如何在实践中应用，并突出项目中的道德问题（例如，如何实施伙伴关系协议）。3)从研究参与者的角度写出4个特定伦理问题/困境的案例，概述特定伦理困难的细节（例如，研究小组中的歧视态度）。每个案例之后将有2到3篇评论——至少一篇由社区研究人员撰写，另一篇由学术或研究学生（包括国际顾问）撰写。4)供CBPR团队使用的实践练习，以及为学术人员、学生和社区合作伙伴提供的培训。这些材料将在NCCPE网站上以可下载的pdf文件的形式发布，也可以在章节中发布，随着时间的推移，可以添加更多的案例、评论和练习，作为与达勒姆大学社会正义和社区行动中心合作的持续资源。该项目有可能使学术界、研究伦理委员会、第三部门和公共部门机构、资助者/赞助者以及开展研究的社区受益。NCCPE和其他机构的传播将提高研究人员、资助者和参与者对CBPR伦理问题的认识；改进政策和流程。

This project will bring together community partners and academics from 4 existing Connected Communities (CC) projects in a workshop and small working groups to share ideas and experiences and develop guidance and learning materials on ethics in community-based participatory research (CBPR). The project will be supported by international advisors from 5 countries and the National Coordinating Centre for Public Engagement (NCCPE) as a partner.Recently interest has grown in CBPR - that is, research tackling issues relevant to communities of place, interest and identity and involving affected people in planning, undertaking, disseminating and using research. This approach is often adopted to give people who are usually the objects of research greater control over the process, to embed research skills in communities and to increase research impact. CBPR approaches are regarded as particularly useful in the context of 'hard to reach' communities, and in research on sensitive issues. Many ethical challenges arise in CBPR - particularly in relation to the power of professional researchers, the blurring of boundaries between community members and researchers and the inflexibility of institutional structures (including university research ethics committees) to cope with unpredictability and complex partnership arrangements. Aims: To deepen understanding of the complex ethical issues and challenges in CBPR and develop ethical guidance, case studies and practical exercises from the UK in a range of settings and disciplinary areas for use in future CC and other research projects.Objectives1)undertake a rapid review of ethical issues in published findings of all CC projects and a detailed synthesis of 4 existing CC projects. 2)Engage in dialogue with a range of stakeholders, including community partners from the projects, international advisors and NCCPE to identify further ethical issues, share and analyse ethical problems and ways of tackling these.3)Produce a document and web-based materials offering ethical guidance, case studies, case examples with commentaries and learning materials relevant to CBPR.4)Encourage improvement in institutional research ethics review, policies, procedures, training and support to take account of the challenges and complexities of CBPR.5)Develop greater awareness/improved practice among university and community researchers and other stakeholders in relation to ethical issues in CBPR.The project will 1) Finalise 'guidelines on ethical conduct' to be drafted by the current Durham CC project.2) Produce 4 case studies, each featuring a different CBPR project, written to show how ethical principles are applied in practice and to highlight ethical issues in the project (e.g. how a partnership agreement was put in place).3) Produce 4 case examples of specific ethical problems/dilemmas, written from the perspective of a research participant, outlining details of particular ethical difficulties (e.g. discriminatory attitudes in the research group). Each case example will be followed by 2 or 3 commentaries - at least one written by a community researcher and another by an academic or research student (including international advisors).4) Practical exercises for use by CBPR teams and in training for academic staff, students and community partners.The materials will be published on the NCCPE website as a downloadable pdf file and also in sections, to which further cases, commentaries and exercises can be added over time as an on-going resource in partnership with Durham University's Centre for Social Justice and Community Action.The project has potential to benefit academics, research ethics committees, third and public sector bodies, funders/sponsors and communities where research takes place. Dissemination by NCCPE and other bodies will result in raised awareness of ethical issues in CBPR amongst researchers, funders and participants; and improved policies and processes.