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.
Public/community engagement in health research with men who have sex with men in sub-Saharan Africa: challenges and opportunities
Community engagement, incorporating elements of the broader concepts of public and stakeholder engagement, is increasingly promoted globally, including for health research conducted in developing countries. In sub-Saharan Africa, community engagement needs and challenges are arguably intensified for studies involving gay, bisexual and other men who have sex with men, where male same-sex sexual interactions are […]
Exploring the Ethics of Long-Term Research Engagement With Communities in Low- and Middle-Income Countries
Over the past few decades, there has been increasing attention focused on the ethics of health research, particularly in low- and middle-income countries. Despite the increasing focus on the literature addressing human protection, community engagement, appropriate consent procedures and ways to mitigate concerns around exploitation, there has been little discussion about how the duration of […]
Gendered negotiations for research participation in community-based studies: implications for health research policy and practice
There is a growing literature documenting the complex realities of consent processes in the field, and the negotiations and ethical dilemmas involved. Much has also been written about how gender and power shape household decision-making processes. However, these bodies of literature have rarely been brought together to inform research theory and practice in low-income settings. […]
“When they see us, it’s like they have seen the benefits!” experiences of study benefits negotiations in community-based studies on the Kenyan Coast
Benefit sharing in health research has been the focus of international debates for many years, particularly in developing countries. Whilst increasing attention is being given to frameworks that can guide researchers to determine levels of benefits to participants, there is little empirical research from developing countries on the practical application of these frameworks, including in […]
Morals, morale and motivations in data fabrication: Medical research fieldworkers views and practices in two Sub-Saharan African contexts
Data fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin and scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on […]
To research (or not) that is the question: ethical issues in research when medical care is disrupted by political action: a case study from Eldoret, Kenya
While considerable attention has been focused on understanding the myriad of ethical analysis in international research in low- and middle-income countries, new issues always arise that have not been anticipated in guidelines or studied extensively. The disruption of medical care arising as a direct result of political actions, including strikes, post-election violence and related activities, […]
The notion that there is a universal ethics is commonly supposed, but less often explicitly discussed, in protocols for ethical procedures in research. In this article, the authors reflect on their action-research with women farmers in a Bolivian highland province. Their project aims to propose ways in which local health services could better serve these […]
By summarising papers delivered at a conference in Kilifi, Kenya this article provides useful learning on relationships in the health research process. The authors argue that more should be done to understand the ethics of relationships between “whole populations, the functioning of research institutions, the processes of collaboration, and the ethics of inequitable international relations.” […]
Anonymity is accepted as necessary for the generation of empirical knowledge concerning human research participants, especially for members of “vulnerable” groups. In particular, anonymity has been given a role in easing the challenges of giving voice to experiences that disrupt familiar and convenient paradigms of knowledge. This paper troubles such a notion, on the grounds […]
The ethics of medical research have grown as an area of expertise and debate in recent years, with two broad approaches emerging in relation to transnational research: (1) the refinement of guidelines and strengthening of review, processes primarily to protect the right of individual research participants and strengthen interpersonal relations at the micro-level; and (2) […]