Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study

Geoffrey M Lairumbi,English C Mike,Michael Parker,Raymond Fitzpatrick

doi:10.1186/1472-6939-12-20

Abstract

BackgroundThe concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya.MethodsWe conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.ResultsOur study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research.ConclusionThis study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings.

Highlights

The concept of benefit sharing to enhance the social value of global health research in resource poor settings is a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research
The potential of the above developments to produce unfairness is exacerbated by the fact that most resource poor settings are characterised by high unmet healthcare needs, weak capacity among ethical and other research regulatory systems to safeguard the interests of research participants, and an often poor exchange model capable of translating research findings into improved health [4,13,14,15]
The accounts that we report here were articulated by researchers, members of Institutional Review Boards (IRBs), policy makers, civil society organisations, research sponsors and community representative groups within such institutions or impacted by their research

Summary

Introduction

The concept of benefit sharing to enhance the social value of global health research in resource poor settings is a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research. The two call for prior consideration of the moral obligations of researchers (and funding institutions) that arise once individuals and groups participate in health related research, including the identification of the benefits to be shared, the beneficiaries and where the responsibility for providing the benefits lie These strategies have influenced the conduct of collaborative health research as evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities [14,16,17,18,19])

Objectives

Methods

Results

Discussion

Conclusion