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Ethics

The ethics of health systems research theme considers the unique ethical challenges associated with long-term research engagement in low- and middle-income countries.


Research questions

  • What are some of the unique ethical challenges when working to reshape health systems in low-and middle-income countries?
  • Does health systems research offer unique ethical dilemmas and require different approaches to ethical review?
  • How do long-term research partnerships with communities and organizations effect the moral obligations of researchers and institutions?

Given the broad-ranging work of FHS in exploring areas of innovation for health systems improvement, thinking through these ethical questions is central to our efforts. It is also important to ensure that we work toward our goals of improved health access and outcomes in a manner consistent with our mission and organisational values.

The FHS Ethics Working Group is dedicated to exploring these ethical questions through engagement with partners, conceptual analysis, and empirical research. 


Recent FHS publications on ethics

Publications

Pratt B, Allen K A, Hyder A A (2015) Promoting equity through health systems research in low and middle-income countries: Practices of researchers, AJOB Empirical Bioethics, doi:10.1080/23294515.2015.1122669

Health systems research is increasingly identified as an indispensable means to achieve the goal of health equity between and within countries. While conceptual work has explored what form of health systems research in low and middle-income countries (LMICs) is needed to promote health equity, there have been few attempts to investigate whether it is being performed in practice. This paper describes the results of a survey undertaken with health systems researchers worldwide to assess how equity-oriented current practice is in LMICs.

The use of mHealth interventions within health systems research is increasing, with few taking into account the connections between gender and mHealth.

This policy brief attempts to fill this gap by exploring key connections between mHealth and gender that need to be taken into account when conducting or implementing mHealth research and interventions. 

B. Pratt and A. A. Hyder (2015) Applying a Global Justice Lens to Health Systems Research Ethics: An Initial Exploration, Kennedy Institute of Ethics Journal, Volume 25, Number 1, March 2015, pp. 35-66, DOI: 10.1353/ken.2015.0005

Health systems research is increasingly being performed in low and middle income countries and is essential to reducing global health disparities. This paper provides an initial description of the ethical issues related to priority setting, capacity-building, and the provision of post-study benefits that arise during the conduct of such research. It presents a selection of issues discussed in the health systems research literature and argues that they constitute ethical concerns based on their being inconsistent with a particular theory of global justice (the health capability paradigm).

Recognizing that the health system is a complex and dynamic network of actors and activities, this paper seeks to push the field of bioethics to develop a more holistic approach from the health systems perspective. Expanding upon the work of existing public health frameworks and drawing upon concepts from related areas such as governance, human rights, and organizational ethics, our provisional list of ethical considerations for health systems fall under the following categories: Holism, Sustainability, Evidence & Effectiveness, Efficiency, Public Engagement & Transparency, Accountability & Feedback, Equity & Empowerment, Justice & Fairness, Responsiveness, Collaboration, and Quality.

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 the research engagement may affect the ethical design and implementation of studies. In other words, what are the unique ethical challenges when researchers engage with host communities for longer periods (10 years or more), and what special considerations does this time commitment generate when applying ethical principles to these kinds of studies? This article begins to outline key areas of ethical concern that arise during long-term, sustained research activities with communities in low-resource settings. Through a review of the literature and consultations with experts in health systems, we identified the following key themes: 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 hope that this preliminary exploration will stimulate further dialogue and help inform ethical guidance around long-term research engagements in the developing world.