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

Ethics and Justice

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The Ethics and Justice Thematic Working Group (TWG) considers the ethical dimensions of health policy and systems research (HPSR) and promotes a recognition that ethics issues and concerns are ‘everybody’s business’.

The TWG are adopting several new inter-related emphases in upcoming years, linked to a recognition of the importance of addressing social justice and decolonisation concerns. The TWG believe it is essential that the field of HPSR determines how to navigate these very complex issues in formal and ‘everyday’ ways across all phases of research.

Objectives

  • Build HSG member and HPSR stakeholders’ awareness and interest in what an ethics lens adds to thinking and acting ‘justly and equitably’ in HPSR
  • Foster cross-regional dialogue amongst a diversity of stakeholders on HPSR ethics by listening to and sharing diverse perspectives on:
    •  the range of ethical dilemmas faced when funding, planning, conducting, disseminating, and reviewing the various forms of HPSR
    • how ethical practice can and should be strengthened
    • how indigenous research ethics can inform HPSR ethics
  • Contribute scholarly work and practical guidance targeting different HPSR stakeholders and aimed at strengthening ethical practice in HPSR, with a focus on justice and applying indigenous research ethics concepts and principles
  • Identify from an ethics perspective the specific opportunities and challenges for HSG (as a key HPSR actor) to promote justice across the field and more widely.

The Ethics and Justice TWG will seek to amplify the voices of many actors and initiatives working on our topics of interest and reflecting with them on the relevance of their ideas and work for HPSR ethics guidance and practice. The TWG intends to have a wide reach across HSG members, and to serve as a strong link for HSG to the broader ethics community. The latter is important: ethics scholars and activists are a critical resource for developing HPSR ethics literature and guidance, and HPSR has valuable contributions for broader ethics thinking and practice.

Activities

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

Bi-Monthly Newsletters

Bi-Monthly Newsletters

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Facilitators

Dorcas Kamuya

Dorcas Kamuya

Co-Chair

Sassy Molyneux

Sassy Molyneux

Co-Chair

Bridget Pratt

Bridget Pratt

Co Vice Chair

Seye Abimbola

Seye Abimbola

Co Vice Chair

Manasee Mishra

Manasee Mishra

Co-coordinator

Hayley MacGregor

Hayley MacGregor

Co-coordinator

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. Dorcas's main research focus is on strengthening the application of ethical principles in research conduct across different contexts. Her research interests span: 1) the value of community and public engagement in health research;2) ethical dilemmas for frontline research workers; and 3) responsibility of researchers and research institutions in resource-limited contexts. She is a member of several collaborative initiatives including the Global Health Bioethics Network, the H3Africa Community Engagement working group, the Africa Ethics Working Group (AEWG) for neuropsychiatric studies, and the International Association of Bioethics (IAB).

Sassy Molyneux

Sassy Molyneux

Co-Chair

Sassy Molyneux is a multidisciplinary researcher whose current research interests span HPSR and empirical ethics, including the everyday ethics of frontline health provision and of conducting studies in resource poor settings. Sassy sits in leadership positions in several international networks/committees, including the Global Health Bioethics Network, REACH, WHO/TDR Implementation research STAC and TAC, and RINGS. Sassy lived in Kenya for 28 years, returning to the UK in 2020.

Bridget Pratt

Bridget Pratt

Co Vice Chair

Bridget’s research focuses on the ethics of global health research and health systems research, with a focus on social and global justice. Her research program develops ethical guidance on how global health research, including health systems research, should be structured to promote health equity between and within countries. Dr Pratt utilises theories from political philosophy and development studies in an innovative way, by applying them to the research context.

Seye Abimbola

Seye Abimbola

Co Vice Chair

Seye Abimbola is a health systems researcher and a global health scholar. He is a member of the WHO Collaborative on Health System Governance, a research fellow at Sydani Initiative for International Development in Nigeria, the editor in chief of BMJ Global Health, and the current (2020-2022) Prince Claus Chair on Development and Equity at Utrecht University, the Netherlands.

Manasee Mishra

Manasee Mishra

Co-coordinator

Manasee is a public health researcher and teacher based in India and for several years was the India country coordinator (2017-18) for Future Health Systems - a DFID funded research consortium. She is currently shifting to a new position which will soon be announced.

Hayley MacGregor

Hayley MacGregor

Co-coordinator

Hayley MacGregor is an Anthropologist who originally trained as a medical doctor in South Africa, at the University of Cape Town, and worked clinically in the Eastern Cape Province. Her research interests include emerging infectious disease; the anthropology of antimicrobial resistance; informality in health provision; and concepts of care and chronicity in responses to lifelong illness, principally HIV.

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

Introducing an Ethics Guide for Health Systems Researchers

L. Keeru

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

Justice: A Key Consideration in Health Policy and Systems Research Ethics

B. Pratt et al

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.

Developing the Ethics of Implementation Research in Health

Vijayaprasad Gopichandran et al.

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.

Strengthening Ethical Community Engagement in Contemporary Malawi

Deborah Nyirenda et al.

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.

A Realist Review of Community Engagement with Health Research

Bipin Adhikari et al.

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.

Towards Inclusive Priority-Setting for Global Health Research Projects: Recommendations for Sharing Power with Communities

Bridget Pratt

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.

Revising Ethical Guidance for the Evaluation of Programmes and Interventions Not Initiated by Researchers

Samuel Watson et al.

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