caption Women at health center Gonoshasthaya Community Health Center (outside Dhaka). Photo: Rama George-Alleyne / World Bank (CC BY-NC-ND 2.0)

Ethics of health systems research

The Ethics of Health Systems Research Thematic Working Group (TWG) aims to explore what ethical issues arise in relation to health policy and systems research (HPSR) in low and middle-income countries (LMICs), how they should be addressed, and by whom.

The goal of this TWG is to initiate critical thinking on the ethics of health systems research in LMICs in order to inform health systems strengthening efforts around the world.

Objectives

  • To build awareness of and interest in the wide range of ethics guidance and literature that is potentially relevant to Health Systems Global (HSG) members.
  • To identify ethical dilemmas experienced over the course of funding, planning, conducting, disseminating, and reviewing diverse forms of HPSR.
  • To share ideas on how relevant ethical theories and principles might be applied to support practice and contribute to guidance for HPSR stakeholders.
  • To contribute scholarly work to the global discourse on health systems ethics and HPSR ethics, especially in LMICs.
  • To help develop capacity for ethics analysis and review of HPSR within LMICs.

Activities

TWG activities include hosting webinars, workshops, meetings at bioethics and global health conferences, conference panels, and Google Group discussions.

News and views

News and views

Access the latest blog posts and news items from the Ethics of Health Systems Research TWG.

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Facilitators

Sassy Molyneux

Sassy Molyneux

Co-Chair

Dorcas Kamuya

Dorcas Kamuya

Co-Chair

Bridget Pratt

Bridget Pratt

Vice Chair

Hayley MacGregor

Hayley MacGregor

Coordinator

Freddy Kitutu

Freddy Kitutu

Coordinator

Sassy Molyneux

Sassy Molyneux

Co-Chair

Sassy is a Professor in Global Health at University of Oxford, based at the KEMRI-Wellcome Trust Research Programme in Kilifi, Kenya, since 1994. She has a PhD in behavioral studies and is currently the chair of the Social Science and Ethics in Public Health theme in Kilifi. Sassy's research work has focused on two main areas: the interface between health systems and households (including exploring household treatment seeking behavior, gender relations and affordability of health care); and the interface between health researchers and communities (including informed consent, community engagement, payments and benefits for research participants and communities, and social science ethics).

Dorcas Kamuya

Dorcas Kamuya

Co-Chair

Dorcas is Head of the Health Systems and Research Ethics Department at the KEMRI-Wellcome Trust Research Programme (KWTRP) in Kenya. She is primarily based at KWTRP in Kenya and works across the UK and the five Wellcome Trust's major overseas programmes in Kenya, Thailand, Malawi, Vietnam, and South Africa. Her research interests include ethical implications of community engagement processes in international collaborative research in developing countries; exploring drivers of community engagement in health research; and ethical and practical challenges and dilemmas for interface research staff.

Bridget Pratt

Bridget Pratt

Vice Chair

Dr Bridget Pratt is an ethics researcher in the School of Population and Global Health at the University of Melbourne. Bridget’s work looks at the ethics of global health research and health systems research, with a focus on social justice and equity. She has developed ethical guidance on the following topics: research agenda setting, community engagement, governance, capacity development, and knowledge translation. Her background is in philosophy, global health, and qualitative research. Bridget received her PhD in bioethics in 2012 and her Masters of International Health in 2009 from Monash University in Australia.

Hayley MacGregor

Hayley MacGregor

Coordinator

Hayley MacGregor is a Research Fellow at the Institute of Development Studies in the UK. Current research interests include the dynamics of poverty and llness/disability, human rights discourses and citizen mobilization in the context of health provisioning, and the ethnography of biomedical research and health technologies. Her research to date has been situated in Africa.

Freddy Kitutu

Freddy Kitutu

Coordinator

Freddy Kitutu is the Coordinator of the Ethics of Health Systems Research TWG.

Day-to-day dilemmas: An ethical guide for health systems researchers

Have you ever had that lurching feeling in the pit of your stomach? Found yourself unable to stop thinking about a troubling interaction that you had with a research participant or collaborator? Felt confused about whether your intervention was doing more harm than good? You are not alone…

View the guide

Publications and resources

Lynda Keeru shares her views on the new ethics resource to support health systems researchers.

There is a deficit of HPSR-specific ethical guidance, particularly in relation to matters of justice. In this paper, the authors call for interpreting the principle of justice in a more expansive way in developing and reviewing HPSR studies (relative to biomedical research).

Special Issue: Ethics of Health Systems Research in Low and Middle Income Countries

Guest Edited by Professor Adnan A. Hyder and Dr Paul Ndebele

This Special Issue of Developing World Bioethics was published in December 2016. It contains papers on The Ethics of Health Systems Research in LMICs.

This paper aims to highlight the differences in application of ethical principles between clinical and implementation research (IR), and to highlight the current gaps in ethical guidelines for the conduct of IR.

Although community engagement is increasingly promoted in global health research to improve ethical research practice, there is sometimes a disconnect between the broader moral ambitions for community engagement in the literature and guidelines on the one hand and its rather narrower practical application in health research on the other.

This realist review is designed to improve our understanding of how and why community engagement contributes to intended and unintended outcomes (including research and ethical outcomes) in different contexts.

Before moving ahead with priority-setting for global health research projects, it is vital to assess whether contextual factors necessary for meaningful engagement between researchers and marginalized communities are present or can be built in the research setting.

This article explores the limitations of current ethical guidance and registration procedures with respect to opportunistic evaluations, providing a number of examples.