Ethical research: reflections from three sites

I will be speaking more about research ethics in the coming month (and beyond!). In light of this, I am documenting some formative ethical experiences I have had and that, to some extent, still puzzle me. Perhaps befitting someone initially trained in anthropology and grounded theory, these examples stem from individual interactions I had ‘on the ground’–moments when research participants or research staff directly critiqued me.*

I am glad they did.

Of course, these are only the ones who spoke up. (What if we asked more consistently?)

1. Ghandruk, Nepal

My first research experience was spending ~3 months in Nepal, including an extended stay in Ghandruk in the Annapurna range, not long after its ACAP office had been blown up by Maoists. There were many ‘firsts’ for me on that trip during undergrad: first time in an LMIC, first homestay, first research project, first primary data collection, first fieldnotes, first altitude sickness, first time working with an interpreter, first goat sacrifice… All around an influential time for me.

An unexpected breakfast, Ghandruk, Nepal

As with many first research projects (and we can definitely discuss some additional ethics around this!), the biggest impact was probably solely on me, not the local community in which I was working and not the world. It will likely come as no surprise that I did not solve the question of where, when, and why people seek care for what would be diagnosed as mental illness, and specifically depression, according to the DSM. Nor did I unravel how illness narratives might shape responsiveness to pharmaceutical treatment.

Nevertheless, I did learn some things! Two snapshots, in particular, have stayed with me from that time (besides the fact that my host mom said I should only come back and visit once I was married…).

1a. This is self-answering.

About three interviews into my project, the interpreter with whom I was working turned to me and suggested I was not making good use of people’s time because I was simply asking the same questions over and over (my first prepared interview guide!). Indeed, he thought I was quite daft and not ‘getting it.’

Some questions he deemed ‘self-answering’ and not worth asking at all (for example, was it hard to pay for health care in this village). Others, he felt that once we had heard from one or two people in the village, we had more or less settled the matter and there was no need to take anyone else’s time. While I ultimately prevailed that there was merit in asking the same questions over and over–and that at a minimum it was what was expected of me by my professor–the point still sticks with me, about how others might view not just the time researchers ask of individuals but also the collective time taken from a community and how they understand researchers’ strange ways.

1b. What will you do for me?

Probably the ‘epiphanic moment’ for me to want to pursue applied public health rather than medical anthropology** happened after interviewing a woman who entered my field notes as Old Woman #3 and later received a pseudonym. My questions–some closed-ended, some open-ended–were about illness etiology and health-seeking behavior. I asked her to list her ailments, to describe how she got it / it got her, what she had done and care she had sought, and whether it was challenging to pay for it.

As we closed the interview, and I believe I provided a university-logoed pen, she asked, now that she had listed all her problems, how I would help her with them. I, of course, had no answer.

This gets at a point raised in several places including forthcoming work from Alex Avdeenko: It’s weird for strangers to come and ask you about all your problems and, then, really weird for them to not offer to do something about it after you’ve provided the list. Or, in a bizarre non-sequitur, to give you a pen. It is no wonder that people may often believe that such question-asking is (or should be) a needs assessment that will ultimately be attached to succor.

2. Tamale, Ghana

I spent a year in Ghana as part of my thesis research, both working with IPA and doing my own work on the side.

2a. Ask me at the end and I will tell you if I agree.

While piloting for work on malaria medication completion in Ghana (and funneling my salary back into my thesis research, follow-up interviews***, and fabric), I accompanied data collectors. Plenty of times, the informed consent and other processes don’t quite go as was written on paper–you said interviews would be conducted in private but actually the respondent wanted someone else there with them. Challenges in keeping to the letter and/or the spirit of the Belmont principles have started getting more ink in the past decade (such as, though very much not limited to, here, here, here)–a trend that should continue and not only situations of randomization.

During one particular interview, an older gentleman said something that struck me. We went through the informed consent process and then he said, ‘but I don’t really know what you are asking. First ask me all of your questions and then I will tell you if I consent.’ From an IRB perspective, this is, of course, backwards, as you have to get consent before you get to your questions, on the assumption that the upfront information you provide is sufficient.

But from the perspective of someone less familiar with research in general and certainly the particulars of your research, it may not be. No matter how well-crafted your consent statement. Consent could be reimagined, potentially, to start by getting us to the point of beginning the interview, to have more scripted reminders throughout that people can skip or stop, and to have an ultimate ‘consent,’ at which point they could request to have their data trashed now that they know everything we planned to ask. If we started to take a view that research participants should learn something about research in the process, rather than just taking CYA measures, it might lead us to reconsider how the informed consent process (possibly reimagined) can be truly informative (and ultimately understood). A corollary is that we might wish to investigate what is of interest to potential research participants, so that we not only say what we are obligated to say more clearly (again, stay tuned for work from Alex!) but, also, to say what will be interesting and useful to those deciding to join.

2b. Honestly, imagine.

Sometimes the lessons on what is locally ‘ok’ don’t come from research participants but rather from research staff. This one has more to do with social norms and relationships but it was an element of positionality and potential offensiveness that I had not considered before. Specifically, our questionnaire included items on working memory, in which participants were giving increasingly long strings of numbers to remember and say back. I know it was a little nerve-wracking, as my thesis advisor/PI Prof Dr. Günther decided to give me a quiz!

Nevertheless, I did not expect it to be a major issue during data collection. I was wrong. However, when we did a feedback survey among the enumeration team at the end of data collection about what went well and what did not, it turns out that asking this question was mortifying to them. While it had not trickled up to me during data collection (my fault), the sheer horror and impropriety of asking someone older than you to remember and recite numbers came through very clearly in the open-ended responses. Imagine, they said, asking this to an uncle. Honestly, imagine.

This may not strictly be a ‘research ethics’ issue but it does hint at the fact that ‘we’ may not always understand what will be sensitive, uncomfortable, or even unacceptable in specific contexts. ‘Sensitive’ (and to whom) is one of the terms in research ethics (like coercion, undue burden, vulnerability, and a few others) that are important enough to be used a lot but so vague as to let you more or less define them as you will–that is, not actually terribly useful beyond bureaucratic CYA.

End-of-data-collection celebration, Tamale, Ghana.

2c. You can’t send that, it’s not fair.

‘We’ do not have consensus on what constitutes appropriate compensation for research participation, veering away from coercion but also providing fair benefits, accounting for the risks imposed by the research. There has been a more robust conversation in medical and pharmaceutical research, such as dialogue on ‘fair benefits’ work by Emanuel, Wendler et al. across several papers and essays. Norms across different types of research and situations vary. The interpretations of non-monetary offerings by research participants may not be what was intended.

Into this space, and on a very low-budget project, we decided we would offer education/information about malaria as compensation for people’s time and also to make sure they better understood our research. This included seeding information about how antimalarial resistance developed when you don’t finish your course of medicine (as part of communication experiment that fell out of my thesis), including using these fabulous illustrations from Liz Venable, which we narrated out loud.

In addition, at the very end of the whole study, we planned (and ultimately did) send an SMS urging people to make use of bednets as well as to use as ACT and complete the course when ill with malaria. Again, the idea was that providing information might not only be useful but reflect some degree of compensation for time spent in our study.

The data collection team was NOT into it. First, they pointed out, almost certainly accurately, that people already knew about bednets. This contrasted with the reason you need to finish all your malaria medication, which might be genuinely new info. More interesting ethically, however, was how upset they were that we would tell people do something but not help them do it. In their view, it was very uncool to say you should use a bednet but not actually provide one.

3. Kiryandongo, Uganda

I have been lucky enough to make two month-plus trips to Uganda in the context of IDinsight’s work with GiveDirectly in Kiryandongo refugee settlement, with both quant-experimental and qualitative components. Both stints coincided with training and early data collection, for the quantitative and qualitative work.

Training out of the elements at Max Hotel.

3a. I can talk to you.

Our longitudinal, semi-structured work has involved, give or take, monthly conversations with a small number of respondents, who tell us about how they are doing and challenges they are facing. Each month we asked a set of similar questions (how they are doing, general sentiment in the settlement and the market, etc.) as well as a focused set of questions on a topic (education one month, health another, detailed transfer-spending plans in a third, say). We have two qualitative interviewers on this project (temporarily paused) and they have done a fabulous job building rapport with our respondents.

While data collection was active, Rico was diligent about reviewing incoming notes and transcripts in more-or-less real-time, which allowed him to give regularly feedback on interview technique and additional probe ideas to our team (blog post forthcoming on this remote management of qualitative data collection by less-experienced interviewers). He was also doing the regular management check-ins with our interviewers. He was the first to note, then, that Stephen and Christian were reporting that sometimes the respondents were calling them at unscheduled time just to chat. In a few cases, the fieldnotes and transcripts also revealed that the respondents felt they had no one else to talk to, that they had suicidal ideation, etc.

At base, this reveals the importance of having a resource-referral list (for which you have checked that the resources are truly operational) as part of standard practice. Working with a population that has recently and collectively experienced trauma makes this all the more important, even if you are not asking ‘sensitive’ questions. This can be really challenging when, for example, you are working in a country that does not host a national suicide hotline–and certainly not one in all the languages relevant to refugees. Nevertheless, it is critical.

This experience, born of extended engagement, also points at challenges, well-known in anthropology and increasingly recognized in other fields (with/out acknowledgement), when the line between ‘data collector’ and ‘confident’ become blurred.

3b. You’ve got a man in Africa.

This final point raises a question about who ‘confidentiality’ is for and who wants it. In some cases, of course, it is absolutely essential to maintain strict confidentiality, with literal life/death implications. But that is not always how it may be seen on the ground. Take Martin, pictured below. I sat in on an interview with him, led by the wonderful Stephen, who had just started as a qualitative interviewer on this project after serving as an enumerator at baseline. I know Stephen went through the process of providing study information carefully and sought a clear statement of consent. I know how much time walking around the settlement Rico and I spent reviewing the informed consent script with our team, making sure it came across as conversational and not a monologue.

First interview with Martin, Kiryandongo, Uganda.

Following consent, first interview guide for these opening talks in a series of longitudinal data collection focused on some history of arriving the settlement, whether people knew or got along with their neighbors, what people thought of the GiveDirectly lottery to determine order of transfer receipt. Following all of this, Martin had Stephen translate a request to me. Namely, that he wanted people to know his story and that I should spread it far and wide. That I should go back to the US and let people know that “I had a man in Africa” who needed help. He insisted on me taking the picture below, to share along with his story. Which, now I have.

Image taken by strong request from “my man in Africa,” Kiryandongo , Uganda

*This might be contrasted with, say, ex-post getting interested in ethics after your study is critiqued.

**Though another would come later when a mentor let me know that the medical anthropologist with whom I was considering pursuing a PhD would try to sleep with me and would make things quite unpleasant for me if I did not. That, too, was a decisive moment–and a different kind of ethics.

***This is how I met Jeff!

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