Inclusion of Marginalized Groups and Communities in Global Health Research Priority-Setting

Journal of Empirical Research on Human Research Ethics
Volume 14 Issue 2, April 2019
http://journals.sagepub.com/toc/jre/current

Ethical Issues in Research with Marginalized Groups
Inclusion of Marginalized Groups and Communities in Global Health Research Priority-Setting
Bridget Pratt
First Published March 13, 2019; pp. 169–181
Abstract
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.