A tough question about my PhD

Hello Ghaiath,

Wish you are fine!

I was reviewing the suggestions you discussed in our previous emails and I would like if you elaborate more on a point you mentioned and is related to your PhD thesis.

The point is related to the concept of moving from ‘research on’ to ‘research with’ the participants. You indicated that it is something you called as moving from  “the autonomy-based model to ‘multi-tier’ trust-based model of research in humanitarian settings”. I’m interested to understand the underpinnings of these models in this context.

Thanks a lot!

What do I mean by moving ethical oversight of research in humanitarian settings from “the autonomy-based model to ‘multi-tier’ trust-based model?
Well, to answer your question, I will try to put my answer in context, through answering three logical questions.

1- What is the current mainstream practice?

2- How to understand the realities versus the expected/supposed?

3- What did I find?


What is the current mainstream practice?

First, the current ethical oversight for the research conducted during humanitarian settings and in general follows the usual steps. The researcher(s) prepare their proposal, find a fund, apply for ethical approval from an ethics committee, the committee reviews then mostly approves it, the study is conducted, and the results are published and hopefully used to improve the work of the agency and its services to the served communities. A typical linear process. Although many of the recent research approaches are moving from a top-bottom approach to a more participatory approach through moving from research on communities to research with communities; there is still a conceptual gap, ethically speaking. The answers to the normative question of which ethical principles ought to guide our assessment and the practical question of how to ensure these principles are missing. This takes us to the second question.

How to understand the realities versus the expected/supposed?To answer the question of which principles ought to guide and how to apply them, I have conducted the qualitative part of my doctoral thesis in Sudan, investigating the current practices and the expectations of the relevant stakeholders. These included the international NGOs and the UN agencies working in Dafur, the governmental bodies responsible for the regulation of the humanitarian and research work in the region, and the Darfuri IDPs in camps. I explored with them through a number of interviews and focus groups (a total of 70 participants (41 males and  29 females) and  662 minutes recorded) what are the current practices in terms of what is ‘research’ to them, how do they practice ethical oversight of research and what do they think it needs to make it better. Here comes the next and last question.

What did I find?
The unpleasant findings were that, with the expectation of MSF, most of the other INGOs did not mention obtaining any ethical approval for their studies (as low as 13% of the studies included in the systematic review I have published with Khalifa Elmusharaf). The better news came from the field, especially from the IDPs’ community. Whenever IDPs are mentioned, the first thing that comes to our minds may be those vulnerable groups of people where the already vulnerable (women, children, elderly, etc.) are even more vulnerable. This was not the case (or at least not as bad as it sounds).I have found a noticeable societal restructuring that they have developed through the two-decades-long conflict that made them able to define and defend their priorities and themselves. 

Although there was a clear lack of studies submitted to the local or international ethics committees, there were alternative mechanisms that not only managed to provide oversight for the research activities within these communities but also managed to maintain their physical and societal survival. Unsurprisingly, they have moved from an individualistic autonomy to relational autonomy where decisions are made collectively through an informed delegation to community leaders through quasi-democratic community structures.

Furthermore, I have found that the most important principle in their context is not autonomy but trust. The whole societal reformation and the standards they use to decide whether an NGO can get it and work is not about how much they know but how these NGOs and the researchers can prove themselves trustworthy. There are various layers/tiers those who want to be let in and work/study need to go through successfully. 

In short, I have found that the linear mainstream approach is both morally irrelevant and not practical for their context. Oversight of research ought to be done within the complex (multi-tier) approach that does not give the final decision for the guidelines-based academicians, ethicists, and humanitarian experts but shifts towards trust-based partnerships between the communities’ tiers, the local authorities, and the humanitarian workers and researchers. 


Final Disclaimer: I am not saying that the current approach is bad or dysfunctional, it just needs to be more creative and more open to various non-standards models of ethical oversight. What I have found is not necessarily readily applicable to other conflict-affected settings but I believe it is worth considering. Finally, I made a call for more researchers to explore the same in other conflict-affected populations. It would be interesting to see the similarities and the differences between Darfur/Sudan and other areas. 
I hope I have answered your question satisfactorily. 



Categories: bioethics, Blogs, research

Tags: , ,

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