I recently attended a conference on ethical research in humanitarian crises, organized by the Post Research Ethics Analysis (PREA) project and Ohio State University’s Center for Bioethics. There was a rich array of presentations from across the world, with presenters sharing the ethical dilemmas they’d faced conducting research in challenging contexts. There was also an exciting sharing of new tools to help researchers negotiate ethical dilemmas – such as this one (still under development) from PREA. The focus was primarily the health sector, but most of the challenges discussed were common to all types of research in humanitarian crises.
There was just one problem: we were almost all academics. This is perhaps not surprising, because humanitarian practitioners are typically too busy to submit abstracts for academic conferences. But the fact that these rich discussions are taking place in universities and not amongst humanitarian practitioners is problematic, because most of the people gathering information from people in humanitarian crises are practitioners.
I am an academic now, but have spent most of my career with humanitarian NGOs. I have engaged in research of various types: overseeing assessments, monitoring and evaluations; managing a team of protection monitors collecting sensitive information from extremely vulnerable people in Darfur; and conducting my own research for ‘policy reports’. All of these activities involved asking people questions, taking their time and their stories, analyzing the information and in some cases publishing it.
I am going to be honest and admit that we never adequately considered ethics. Yes we explained what the research was about (sort of), and we sometimes had consent forms (although usually not), but we never really analysed the nature of the vulnerability of the research participants and weighed up the costs and benefits – to them – of their participation.
The other thing we didn’t do, or at least not very often, was call it research – we thought it was just good humanitarian practice. And therein lies the problem. If we don’t call it research, we won’t think that ethical research principles apply. But if we’re knocking on doors, gathering people together for focus group discussions, asking questions and collating and analyzing the information, it’s research – whatever we choose to call it.
The principles of ethical research relevant to humanitarian crises have been discussed in earlier posts on the Evidence Aid forum including by Donal O’Mathuna and Matthew Hunt. There’s one that’s particularly important in humanitarian crises, and that’s beneficence. This is the principle that research must benefit participants, and that the benefit must justify the cost of participation.
This principle poses enormous challenges in humanitarian crises, because (as Matthew Hunt rightly notes) the risk of harm to participants is often high. Research participants in humanitarian crises are often extremely vulnerable. They may have been displaced from their homes, lost friends and family members, and experienced or witnessed traumatic events. Answering the questions of researchers may be traumatic, uncomfortable or simply inconvenient. In conflict contexts it could also put participants at risk of retaliation by groups opposed to the research, or opposed to the organization conducting the research or whichever government they’re seen to be associated with. The 2017 Aid Worker Security Report said that aid agencies are seen as associated with the government in ‘nearly every contested environment’, and it quoted Al Shabaab in Somalia as saying ‘all NGOs work for spying agencies’. It’s pretty obvious what this means for people seen providing information to NGOs.
In his writing on African refugees in the 1990s, David Turton said that research into human suffering is only justifiable if it aims to alleviate that suffering. If I reflect honestly on the research projects I’ve been involved with, and ask whether they aimed to alleviate the suffering of those whose stories I collected, I’d have to say no. I’d like to think they contributed to a body of knowledge, but – to quote one of the presenters at last month’s conference, Veena Pillai – ‘there’s an assumption that if you’re contributing to the knowledge base you’re doing good. It’s not enough’.
The answer is not to stop gathering evidence in humanitarian crises, because evidence is essential in order for us to know whether our humanitarian assistance is relevant or effective. Without evidence we also can’t hold ourselves accountable to those we seek to assist.
But we do need to think about ethics – and perhaps, as suggested by Julian Sheather in his post on this forum, there’s a need for more guidance (a ‘workable global consensus’) on the ethics of data gathering in humanitarian crises. Hopefully such consensus wouldn’t require every assessment or evaluation to go to an ethics review board, but it should require that we think about and analyze vulnerability, analyze the cost of participation and consider paying people for their time, and honestly appraise whether our data gathering will do the participants any good. It should also require us to follow ethical research practices such as obtaining informed consent and sharing our findings with participants, and that we think about how we’re going to safely store and protect people’s personal information. And it should require us to do these things for all types of research, even those that are fundamentally the practice of humanitarianism.
This piece was first published on the Evidence Aid website