Prioritizing dignity in practice
Understanding research dignity from the participant perspective
By Robert Nyaga, Ann Wanjiku, Ruth Wambua, Cecile Juma, Joel Mumo and Tom Wein
“It is easy to romanticize poverty, to see poor people as inherently lacking agency and will. It is easy to strip them of human dignity, to reduce them to objects of pity. This has never been clearer than in the view of the Global South, in which we are shown poverty and conflicts without any context.”
-Chimamanda Ngozi Adichie, The Danger of a Single Story.
In The Danger of a Single Story Chimamanda Adichie talks about her college roommates’ surprise to find out that someone from Africa listened to Mariah Carrey and not some tribal music. Her roommate, Chimamanda explained, had been fed a single story of Africa. When a story is told from a single perspective nuance is often sacrificed. It is in the nuances that dignity lies.
The use of experiments in social science has brought huge gains in our knowledge of the world. Recently however, sharp critiques of the power imbalances within the discipline have been made. Often missing in this debate is an empirical study of the preferences of those research participants, and the societies they belong to. That’s at the core of our new agenda on research ethics in the Global South.
We conducted a qualitative study to understand the experiences and preferences of our research participants in low-income areas in Nairobi Kenya that showed how we can be more respectful as researchers:
- Participants want to be involved in research in meaningful ways. They perceive research to be of value if it helps to truthfully identify the gaps and challenges that a given community is facing. Research should also recommend actionable and sustainable solutions targeted at the most deserving populations within the community to be implemented by policymakers or development actors.
- Participants want researchers to share results. They feel a sense of satisfaction when participating in research and would love to tell their community members what their participation yielded.
- Participants want researchers to improve consenting processes, with a clearer explanation of what to expect from each study. All reported negative experiences with research were as a result of unclear study procedures and sensitive questions. Participants want researchers to take time and explain clearly any decision that may affect their participation in research.
Understanding every step
Our study also sought to understand participants’ current research experiences. We did this through mapping their emotional journey through our data collection process at the Busara In-Person Decision Lab in Nairobi. We will tell this story through the eyes of Caesar, a fictional Busara study participant.
Overall, our participants told us that they had a positive experience with Busara’s research and they valued improvements that had been made in recent years — but as Caesar’s journey shows, there were also sticking points and frustrations that they’d like to see improved.
Step 1: Recruitment
It’s a Monday morning and Caesar receives a call. The voice on the phone introduces themself as a lab assistant at Busara and reminds Caesar that he is enrolled in our pool of participants. This call, the voice continues, is to inform Caesar that he meets the inclusion criteria for a study happening in two days. The lab assistant continues to give Caesar some information to help him decide whether to attend: a summary of the purpose of the study and objectives, the arrival time, the amount of compensation to be given, and directions to the decision lab.
Caesar decides to attend the lab session.
Step 2: Arrival
The first people Caesar meets when he arrives at the decision lab are the security guards. He signs in, noting the time that he arrived — on time. The guards politely show him to the Busara office and he walks through the door. He is confused as the signage in the room is inadequate and stands baffled for a moment or two until he spots and asks someone to help. He is then shown where to sit as he waits for the other participants to arrive. The room is extremely busy and soon there is not enough space for all participants to sit — some stand in the corridor. Caesar does not know how long he will wait and has to pay attention to each lab officer reading out names until, on one list, he finally hears his own.
Step 3: Consent and tasks
Once the identification exercise is over, the lab officer hands Caesar and fellow participants a consent form and a pen. The officer reads out the consent information as the participants listen. He then asks if there are any questions — and if not, that they sign at the bottom of the page to indicate they willingly accepted to participate.
Everyone signs the consent document and they are ushered to the decision lab where the survey instrument is administered. Part of the questionnaire they are asked to fill out involves questions around sexual health behaviors. Caesar is extremely uncomfortable answering these questions and doesn’t understand how these questions will benefit him. He wishes he’d known to prepare himself for this topic. Still, despite this discomfort, Caesar completes the survey and goes back home.
Step 4: Payments
During the session, Caesar and fellow participants were promised payment within 3 business days. On Friday afternoon while relaxing with his friends after work, Caesar receives KES 500 from Busara, as promised. He is very excited and tells his friends about the study he participated in at Busara. He tells them to wait for their turn and they will be invited.
Step 5: Feedback
It’s been months since Caesar came to the decision lab and he’s never received any information about the study he participated in. However, he has now been invited to another study and is curious about what happened to the results of the other study.
Knowing this we will now build on the information gathered from talking to our participants. Our lab protocols are already changing to better serve our participants. We recently conducted an experiment showing that post-study feedback makes a big difference to our participants — look out for the full results on that in the coming weeks. Feedback Labs will soon allow us to test improvements to consent and more variations on feedback. We’ll continue to co-create, test, and disseminate changes to research processes and practices that improve participant welfare and uphold ever-higher standards of ethical research practices as it is both more just and likely to produce better quality research. As always, we will share our learnings as we go.