Scholarlink

<p>Diabetes affects 589 million adults worldwide and is a powerful driver of social and economic inequity, especially in low- and middle-income countries, where cultural, economic, and structural barriers to prevention and care are frequently overlooked by conventional top-down research models. Participatory Health Research (PHR), by actively involving people living with diabetes in every phase of the research process, offers a pathway toward co-creative, equitable knowledge production - yet it also generates distinctive ethical challenges that exceed traditional frameworks. Despite the growing use of participatory approaches in chronic disease research, no previous synthesis has systematically examined how ethical principles are operationalised in participatory diabetes research. This narrative review synthesises ethical practices and dilemmas in five heterogeneous PHR studies on adult diabetes published between 2013 and 2023, using the International Collaboration for Participatory Health Research (ICPHR) guidelines as an analytical lens. Key themes include dynamic and processual consent, fair compensation without coercion, community co-ownership of data, cultural safety as foundational infrastructure, and the persistent difficulty of achieving genuine power-sharing across all research phases. The findings demonstrate that ethical practice in participatory diabetes research cannot be reduced to procedural compliance. It requires ongoing negotiation of power, relational autonomy, inclusivity, and reciprocity. Adapting existing ethical frameworks to participatory values is therefore essential if diabetes research and care are to become truly equitable and effective.</p>

错误：搜索内容不能为空，请输入英文关键词
错误：关键词超出字数限制，请精简
高级检索

Rethinking research ethics in diabetes: lessons from participatory health research

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2026年7月7日

查看全文
  • Helena Figueiredo,
  • Irma Brito,
  • Cláudia Chaves,
  • João Emanuel Diogo

摘要

Diabetes affects 589 million adults worldwide and is a powerful driver of social and economic inequity, especially in low- and middle-income countries, where cultural, economic, and structural barriers to prevention and care are frequently overlooked by conventional top-down research models. Participatory Health Research (PHR), by actively involving people living with diabetes in every phase of the research process, offers a pathway toward co-creative, equitable knowledge production - yet it also generates distinctive ethical challenges that exceed traditional frameworks. Despite the growing use of participatory approaches in chronic disease research, no previous synthesis has systematically examined how ethical principles are operationalised in participatory diabetes research. This narrative review synthesises ethical practices and dilemmas in five heterogeneous PHR studies on adult diabetes published between 2013 and 2023, using the International Collaboration for Participatory Health Research (ICPHR) guidelines as an analytical lens. Key themes include dynamic and processual consent, fair compensation without coercion, community co-ownership of data, cultural safety as foundational infrastructure, and the persistent difficulty of achieving genuine power-sharing across all research phases. The findings demonstrate that ethical practice in participatory diabetes research cannot be reduced to procedural compliance. It requires ongoing negotiation of power, relational autonomy, inclusivity, and reciprocity. Adapting existing ethical frameworks to participatory values is therefore essential if diabetes research and care are to become truly equitable and effective.