Journal of Empirical Research on Human Research Ethics
Volume 14 Issue 2, April 2019
Ethical Issues in Research with Marginalized Groups
Inclusion of Marginalized Groups and Communities in Global Health Research Priority-Setting
First Published March 13, 2019; pp. 169–181
Community engagement is gaining prominence in global health research. But community members, especially those from groups and communities that are considered disadvantaged and marginalized, rarely have a say in the agendas and priorities of the research projects that aim to help them. This article explores how to achieve their inclusion in priority-setting for global health research projects. A total of 29 in-depth interviews and one focus group were undertaken with researchers, research ethicists, community engagement practitioners, and community-based organization staff. Thematic analysis identified two core dimensions of inclusion—representation and voice—and what is necessary to realize them with marginalized groups and communities in global health research priority-setting. A set of ethical considerations is proposed to assist researchers and their partners design more inclusive priority-setting processes.