Research in global health emergencies: ethical issues
Why is this report needed?
See introduction and Chapter 1 of the full report
Global health emergencies are health emergencies that are of concern to more than one country. They can have many causes, including (singly or in combination):
- epidemics of infectious diseases such as Ebola, measles, Zika virus, or Lassa fever;
- natural disasters such as earthquakes, tsunamis, floods, or hurricanes;
- human-made disasters, such as large-scale industrial accidents, conflict, and mass displacements of people.
Research conducted during global health emergencies raises particularly complex ethical challenges.
Different kinds of research can help to:
- improve understanding of the concerns of people affected by the emergency, and of how emergency responders can best prioritise needs;
- make diagnoses quicker and easier, so help can be given faster;
- develop new vaccines and treatments for diseases that cannot currently be treated, or where treatment options can be significantly improved;
- adapt existing ways of caring for people, so that the services provided are appropriate and sensitive to their needs; and
- find the best ways of providing health services in very challenging situations.
Humanitarian organisations and others may also gather data from populations affected by emergencies in order to audit or evaluate the services that they provide. This is not usually treated formally as ‘research’, but raises many of the same ethical issues.
Why is research needed in global health emergencies?
Better evidence about what helps or does not help during an emergency is needed in order to improve the response to global health emergencies. Research conducted during the emergency itself plays a crucial role in obtaining this evidence, and helps support the immediate response, as well as learning for the future.
Global health emergencies by their nature are challenging environments in which to conduct research. They involve disruption and great health need, among multiple urgent needs, and may often be accompanied by time pressure to act, competing lines of accountability, uncertainty, and distress. All these factors add to the risks that research, however well intentioned, could cause direct harms or inadvertently add to existing injustice and exploitation. However, there are also risks in not conducting research – for example the risks of providing inadequate, ineffective, or even harmful care.
This report aims to identify ways in which research can be undertaken ethically during emergencies, in order to promote the contribution that ethically-conducted research can make to improving current and future emergency preparedness and response.
A note on terminology
This report uses the term ‘global health emergencies’ to refer to emergencies that cannot be managed effectively without help from outside the country – for example support from the World Health Organization and other United Nations bodies, from humanitarian organisations, from overseas donors, or from research teams in other countries.
Responding to a ‘global health emergency’ involves cooperation between many different organisations. There will inevitably be tensions as a result of differences in approach, and scope for disagreement over control, responsibility, and legitimacy.
Depending on the cause of the emergency, the terms ‘humanitarian crisis’ or ‘complex disaster’ are also often used, and this report does not seek to distinguish between these terms.
What are the ethical challenges?
‘Research ethics’ is often thought to refer only to the process of independent ethical review that all research involving human participants should receive. We make the case for a much broader approach to research ethics.
Ethical challenges in global health emergencies include:
- Questions of power and influence: how are the voices of those who are most affected by emergencies meaningfully included in deciding what research takes place, where, and how?
- Questions of appropriate study design and flexible review that are sensitive to the difficult contexts in which research is taking place.
- Achieving meaningful consent processes within a wider ethical system of governance, to ensure people’s interests are respected.
- The need for greater fairness in collaborations between researchers and research institutions in different countries.
- Consideration of when and how data and biological samples provided during an emergency may ethically be used by other researchers.
- How front-line research workers can be better supported in addressing the ethical dilemmas they face.
Ethics is not just about the behaviour of people directly involved in the research. The decisions taken at policy level – by funders, regulators, research institutions, journals, and others – are very influential in shaping and limiting the possibilities for ethical research conducted on the ground. Our recommendations are aimed at those organisations whose policies and actions could bring about real change.