The overall aim of health systems research is applied; to make a positive difference to policy and practice. This requires mutual understanding throughout the research process between researchers and implementers (governments, NGOs, and communities).
Strong respectful relationships – between investigators, between researchers and the communities and institutions that they work in, with policy makers, practitioners and other users of research – are key to research success and vital to ethical practice. In this section we have collected resources which illuminate how relationships can prompt ethical quandaries but also support identifying strategies to resolve them.
Some research projects are undertaken within collaborations or consortia which bring together implementing organisations from a number of countries or organisations. Parker and Kingori’s (2016) paper highlights for collaborative global health the importance of a series of factors that researchers see as essential in judging the merits of active participation in global health collaborations, including: respect for the needs, interests and agendas of partners; opportunities for discussion and disagreement; trust and confidence; and, justice and fairness in collaboration. This and other papers highlight that collaborations and consortia are shaped by a range of power dynamics and imbalances which researchers should be mindful of. Pratt and Hyder (2016) provide a checklist that can be used by trans-national research collaborations to determine where their governance practices strongly promote equity and where they may fall short.
The paper by Crane et al. (2017) addresses the issue of capacity building (which many donors demand as a component of research partnerships). Often the flow of resources, skills and knowledge is assumed to flow from high-income countries to low- and middle-income countries within these frameworks. The paper explores how one capacity development intervention led to new risks and the weakening of local ownership and room for manoeuvre. It offers lessons for how these negative outcomes can be avoided.
The paper by Hyder et al. (2012) outline some of the ethical issues that come to the fore when researchers engage with low-resource communities over the longer term. These include: “fair benefits and long-term beneficence; community autonomy, consultation and consent; impacts on local health systems; economic impacts of research participation; ethical review processes; and institutional processes and oversight within research organizations.”
We have also included literature on ‘community engagement’ which is a package of interventions employed by research programmes to ensure that local views and beliefs are taken into account and ideally shape priorities and practice. These cover issues like consent, agenda setting and equity.
Global health research in an unequal world: ethics case studies from Africa
This book is a collection of fictionalised case studies of everyday ethical dilemmas and challenges, encountered in the process of conducting global health research in places where the effects of global, political and economic inequality are particularly evident. It is a training tool to fill the gap between research ethics guidelines and their implementation on […]
Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics
Data collectors play a vital role in producing scientific knowledge. They are also an important component in understanding the practice of bioethics. Yet, very little attention has been given to their everyday experiences or the context in which they are expected to undertake these tasks. This paper argues that while there has been extensive philosophical […]
Patient engagement in research: a systematic Review
A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer four key questions: what are the […]
“The way the country has been carved up by researchers”: ethics and power in north–south public health research
Despite the recognition of power as being central to health research collaborations between high-income countries and low- and middle-income countries, there has been insufficient detailed analysis of power within these partnerships. The politics of research in the global south is often considered outside of the remit of research ethics. This article reports on an analysis […]
Defining Health Research for Development: The perspective of stakeholders from an international health research partnership in Ghana and Tanzania
The study uses a qualitative empirical method to define Health Research for Development. This project explores the perspectives of stakeholders in an international health research partnership operating in Ghana and Tanzania. We conducted 52 key informant interviews with major stakeholders in an international multicenter partnership between GlaxoSmithKline (GSK, Vaccine Developer) and the global health nonprofit […]
Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya,
There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that […]
Consent and community engagement in diverse research contexts
Consent and community engagement (CE) in health research are two aspects of a single concern-that research is carried out in a respectful manner where social value is maximized. There are important overlaps and interdependencies between consent and CE; for example, CE can provide insights into how best to tailor consent to context and can be […]
Field workers at the interface
This issue of Developing World Bioethics includes a collection of papers on intermediary staff and volunteers working at the interface between research institutions and researchers, and the communities from which research participants are recruited. ‘Field worker’ – a short hand commonly used in many research settings – refers here to those whose main role is […]