Palliative care research in developing countries: ethical deliberations and practical solutions

Background: There is a growing need for palliative care research in developing countries to evaluate initiatives and identify areas for expansion of services. However it is acknowledged that undertaking palliative care research is not without both practical and ethical dilemmas due to the vulnerable population involved. Within the western world there are formally established research ethics processes that act to provide quality mechanisms and to protect participants. In developing countries there are limited formal systems in place, coupled with low literacy rates that may prevent truly independent informed consent and could potentially result in exploitation. It is widely accepted that the key principles inherent in undertaking research in developing countries include the duty to alleviate suffering, to show respect for people and to avoid exploitation of the vulnerable. Although the Nuffield Council on Bioethics provides guidance regarding clinical research that clearly highlights issues for consideration, in particular surrounding gaining informed consent, there is limited guidance available for palliative care researchers on the practical implementation of key ethical principles. The aim of this paper is to discuss how palliative care researchers can transfer good practice surrounding ethical principals to developing countries. Practical issues surrounding recruitment, obtaining informed consent, the use of interpreters, payment for participants and the role of the researcher once the project is completed will be discussed. Examples from palliative care research undertaken in sub-Saharan Africa will be given to illustrate examples of good ethical practice