The Ethics of Public and Service User Involvement in Health Research: The Need for Participatory Reflection on Everyday Ethical Issues

In their contribution, Wiggins and Wilbanks (2019) discuss the rise of citizen science and elaborate on several ethical issues that go beyond standard approaches in research ethics. They rightly say that citizen science, in including the public in scientific research, relates to participatory action research and action research. They notice that this is no longer prominent in current forms of citizen science, which focus on involving the public in data collection and data analysis. We argue that participatory health research (PHR), which, in terms of Wiggins and Wilbanks (2019), emphasizes co-creation with rather than contribution of the public, may help to identify ethical issues that are not in the forefront, and to find new ways of dealing with them by focusing on relationships between citizen researchers and academic researchers and fostering participatory reflection on everyday ethical issues.