Patient and Public Involvement with Forced Migrants: An Empirical Exploration of Ethical Issues.

Abstract

Patient and public involvement (PPI) with forced migrants can have positive impacts on health research, but empirical knowledge on the ethics of involving forced migrants is scarce. Unsolved ethical issues risk hindering meaningful involvement and jeopardize the research process, as well as harming the public contributors and causing moral distress. In this article, we aimed to identify ethical issues in PPI with forced migrants and present case examples, based on qualitative data and using thematic analysis, as well as analyse the issues using the ethical principles by Beauchamp and Childress as well as PPI-centred values. The ethical issues identified were "Treating forced migrant public contributors as a vulnerable group can inhibit autonomy"; "Non-inclusive communication strategies can contribute to injustice"; "Regulations around payment risk excluding the most vulnerable from involvement"; "Public contributors risk being excluded from partaking in decision-making," and "If trust is not established, public contributors do not feel safe sharing honest input." Further, we discussed the ethical issues using relational ethics, with a focus on how to conduct PPI with forced migrants in an ethical way.