Ethics and participatory health research

Abstract

Participatory Health Research (PHR) and related participatory action research approaches share the normative ideals of transformation, social justice, and inclusion. PHR researchers seek, together with people who are involved in an issue, to make a difference and improve local situations. Ethics is at the core of this type of inclusive research. This means not simply "doing ethics" by submitting a proposal to an Ethics Commission Board, but is an integral part of what participatory researchers do. It means practicing research in an inclusive and democratic way and fostering mutual learning and collective action (process), with the aim to bring about social justice and social inclusion (outcome). PHR involves people who are not usually involved in research, which creates daily situations in which ethical issues may arise, such as who decides, who participates, who is excluded, what does it mean to share power equally, or whose knowledge counts. Ethics is, therefore, more than following procedures about informed consent and privacy and relates to everyday ethical issues, and relational and moral complexity. This chapter introduces the context of ethics in PHR, ethical guidelines for PHR, and the concept of ethics work in PHR. Ethics work entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethical issues often relate to power differentials, partnership, and collaboration in inclusive research. Reflection on ethics in PHR, in collaboration with those who are subject of the ethical issue, is a pathway towards ethical PHR.