Research in humanitarian crises – ethics and evidence gathering
Author: Julian Sheather
Confronted with a humanitarian crisis, whether it be the outbreak of a deadly infectious disease or the aftermath of a natural disaster, responders want to know what works, and they want to know this quickly.
What impact do specified anti-virals have on an Ebola patient? What about intravenous fluids? Is it more effective to transport specimens by drone or by truck? How can fresh water and sanitation be secured?
In most humanitarian crises, the time to make decisions is short and the need is very, very long. This is even more reason for those responding to know what works. To put it bluntly, it is a moral imperative. And to fulfil the imperative we need, one way or another, to gather data. Using the terms in its broadest possible sense, we need some research.
But how much of a moral imperative is the requirement to gather data, and to what extent should it be traded off against other moral imperatives in a humanitarian crisis? For humanitarian responders, the primary moral obligation is presumably rescue: saving the lives of those at risk of serious harm or death. So, we must ask ourselves, is it ever morally permissible to divert resources away from saving these lives in favour of identifying what works?
Assuming that identifying what works is more likely to help people in the future than those suffering now, we can phrase the question differently: is it ever morally permissible to put the interests of future people, or people who will be at risk in the future, before those who are at risk now? (If identifying what works will help both those suffering now and those suffering in the future, you’ve hit the sweet spot and the moral question is less pressing – although some balancing might still be required.)
As a starting point, let us accept that some data gathering during humanitarian crises is justifiable, even if we are unlikely ever to agree on how much. Many, but by no means all humanitarian workers are sympathetic to this position. We know however that some forms of data gathering can be harmful – and not just because they get in the way or divert resources from more important things. At one end lie the infamous harms – think of the Tuskegee syphilis study – of unregulated medical research. But, even innovative changes that might have benefits can have unintended harms. For example, how safe is it to transport contaminated samples by drone? What are the risks?
Out of awareness of these risks – and some terrible history – has grown the understandable desire to regulate data-gathering, to subject it to ethical oversight. But this oversight can be burdensome in itself. It can take time. And, in humanitarian crises, time is one of the many things in short supply. When seeking trade-offs between rescue and data-gathering, there is an understandable desire to make data gathering as easy as possible – more benefit from less burden. This brings with it pressure to make regulation of data gathering light touch. But just how light touch is too light touch? What aspects of regulation are essential, what can be adapted or expedited?
The trade-off between the moral imperatives described above, and subsequent pressure on the regulation of data gathering, are central questions for humanitarian action. However, international guidance is piecemeal and patchwork. There is a pressing need to find a workable global consensus on these vital issues. Researchers, regulators and responders need to come together to achieve this – without real progress, humanitarian action risks stumbling into avoidable wrongdoing and will continue to expose itself to serious reputational risk.
About the author:
Dr Julian Sheather (PhD) is a writer and ethicist. He is special adviser in ethics and human rights to the British Medical Association and an ethics adviser to Médecins Sans Frontières. His particular interests lie in health and human rights, medical ethics in times of conflict, humanitarian ethics, public health ethics and mental health and mental capacity. He is the BMA’s policy lead on resource allocation, medical professionalism and NHS change. He writes widely on issues in ethics and health and is a co-author of Medical Ethics Today, the BMA’s handbook on medical ethics and medical law, Assessment of Mental Capacity (with the Law Society) and is a regular contributor to the British Medical Journal and The Journal of Medical Ethics. He sits on the British Medical Journal’s ethics committee, and is a member of the Nuffield Council on Bioethics’ working group on ethical aspects of research in global health emergencies. He lectures widely both nationally and internationally on a range of topics in medical ethics.