By: Michele O’Shea
During October to November 2021, I spent 6 weeks Kisumu Kenya working with our collaborators at Jaramogi Oginga Odinga Teaching and Referral Hospital. Our specific project is aimed at evaluating a new set of illustrations to assess for symptomatic pelvic organ prolapse and urinary incontinence. It is an early step in the process of understanding the burden of pelvic floor disorders in Kenya and informing strategies to better diagnose and treat patients with these conditions. As part of the study, we are asking patients presenting for outpatient care to tell us whether they have the symptoms represented in different illustrations of prolapse, urgency urinary incontinence and stress urinary incontinence. Then, to determine whether the patient clinically has symptomatic prolapse or urinary incontinence, we speak with the patient about her symptoms and perform a brief pelvic exam.
From the study’s start, we were plagued by slow recruitment, primarily related to patients declining to undergo a pelvic exam. My co-investigators, Dr. Omoto and Dr. Gwer, and I were perplexed by the slow recruitment rate. However, recently the local research assistant relayed to me that she was explaining the study to a patient, who was initially agreeable to all components including the exam, until she asked whether the mzungu (a Swahili word used to refer to white people) would be the one performing the exam. When the research assistant confirmed that I, a mzungu gynecologist, would perform the exam, the patient declined participation. When asked why, the patient recounted a story that happened 2 years ago, when she participated in another research study conducted by a different mzungu. When it came to the pelvic exam, she was surprised when the mzungu began to take pictures of her genitalia. After feeling violated by that unexpected portion of her study exam, she was not interested in participating in further studies with mzungus. Another woman in clinic that day recalled a similar story and declined participation in our study.
This justified distrust in research is something that I, a mzungu, would not be able to repair during my brief time in Kenya. However, giving this unknown mzungu the benefit of the doubt, I could not help but wonder where the communication may have broken down during the previous study. Was the genital picture used to document pathology? Or was it part of the study itself – like testing a smartphone-based diagnostic application? In either case, I could imagine somewhere deep in the IRB consent form the fact that a camera was to be used may have been mentioned. However, even if the impending presence of a camera had been buried somewhere in the consent document that the patient signed, did it ultimately matter if it wasn’t communicated to the patient in a way that was crystal-clear to her?
As for the previous mzungu researcher in this case, I do not assume that the patient’s horrible experience was the result of a mere miscommunication related to a faulty consent process. It is not my place to attempt to justify or explain the prior researcher’s actions. But her story underscores our responsibility to consider how, even with the most enlightened of intentions, we can unknowingly perpetuate well-founded distrust in mzungus and in research, wherever it takes place.
This requires continuously examining our approach to the conduct of research, and contemplating how, not if, we can do better.