Ethical Considerations for Research in CKD of Unknown Etiology: Reflections From an Ethics Panel at the Fourth International Workshop on CKD of Unknown Etiology

Chronic kidney disease (CKD) of unknown etiology (CKDu) is a form of tubulointerstitial kidney disease predominantly affecting impoverished agricultural communities in the global tropics, with major hotspots identified in Mesoamerica and South Asia. From February 14 to 16, 2024, the Consortium for the Epidemic of Nephropathy in Central America and Mexico (CENCAM) hosted the Fourth International Workshop on CKDu in Antigua, Guatemala. The workshop hosted > 100 experts of CKDu from Central America and around the world. For the first time, a panel discussion was dedicated to the ethical challenges of conducting CKDu research and interventions in low-resource communities affected by the disease. Epidemiologists, nephrologists, and scientists with expertise in community-based research and bioethics on the panel identified several key ethical considerations, primarily centered on researcher interactions with affected communities or other CKDu stakeholders. These included aligning research priorities, study designs, consent procedures, and the return of results with the needs and concerns of CKDu-affected communities; fostering equitable North-South collaboration in CKDu research; and ensuring that research findings are translated into meaningful actions to help mitigate the disease’s impact, even as scientific understanding remains incomplete. The panel emphasized that affected communities, local health care systems, regional governments, and international researchers are all critical stakeholders in CKDu research. Ongoing discussion is essential to ensure that ethical considerations remain centered in response to emerging challenges and insights related to CKDu.