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.
A systematic review on ethical challenges of ‘field’ research in low-income and middle-income countries: respect, justice and beneficence for research staff?
Primary data collection in low-income and middle-income countries (LMICs) is associated with a range of ethical complexities. Considerations on how to adequately ensure the well-being of research staff are largely neglected in contemporary ethics discourse. This systematic review aims to identify the ethical challenges that research staff across different hierarchical levels and scientific disciplines face […]
Working with Community Advisory Boards/Groups to support community engagement in clinical research on COVID-19
Information on establishing and working with different types of advisory groups and boards in the context of the COVID-19 pandemic.
The Oxford Global Health Bioethics Conference explored the current and future role and agenda of bioethics. This blog explores some of the themes of the conference with a health systems slant including: the role of bioethics in a changing world; ethical issues attached to community engagement, benefit sharing, equity, and capacity development, and human infection […]
Community engagement is gaining prominence in global health research. Growing consensus about the importance of community representation and participation for ethical research means research institutions and funding bodies now promote, or even mandate, engagement with communities as an important component of “traditional” non-participatory health research projects. In practice, however, global health research priority-setting is dominated […]
Several foundational documents of bioethics mention the special obligation researchers have to vulnerable research participants. However, the treatment of vulnerability offered by these documents often relies on enumeration of vulnerable groups rather than an analysis of the features that make such groups vulnerable. Recent attempts in the scholarly literature to lend philosophical weight to the […]
Good and Bad Research Collaborations: Researchers’ Views on Science and Ethics in Global Health Research
There has been a dramatic rise in the scale and scope of collaborative global health research. A number of structural and scientific factors explain this growth and there has been much discussion of these in the literature. Little, if any, attention has been paid, however, to the factors identified by scientists and other research actors […]
Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health […]
Global health research partnerships are increasingly taking the form of consortia of institutions from high-income countries and low- and middle-income countries that undertake programs of research. These partnerships differ from collaborations that carry out single projects in the multiplicity of their goals, scope of their activities, and nature of their management. Although such consortia typically […]
This paper is based on the experiences drawn from a long-term social science research programme on the impact of the AIDS pandemic on orphanhood in western Kenya. It discusses the ethical dilemma of maintaining a delicate balance between research ethics, the expectations of the study population and negotiating the community’s vested interests in a health-related research project […]
This study of a global health research partnership assesses how U.S. fiscal administrative policies impact capacity building at foreign partner institutions. We conducted a case study of a research collaboration between Mbarara University of Science and Technology (MUST) in Mbarara, Uganda, and originally the University of California San Francisco (UCSF), but now Massachusetts General Hospital […]