I don’t normally have any contact with the respondents in my studies, and that is by design. My being present during interviews could change the results, particularly given the sensitive topic. We work very hard to ensure that the surveys are done in private, with gender-matched interviewers, and that a rapport can be developed, so people feel comfortable telling the truth. There’s also a potential confidentiality concern: we take great pains to keep people’s identifying information private and separate from other data, and having me interact with the respondents seems like it could be an issue. The whole process is designed to ensure confidentiality and data quality, since those are the be-all and end-all of human subjects research, at the cost of reducing the extent to which the people in my study seem like actual people, with thoughts and feelings and emotions. I don’t see them, which pushes them somewhat disturbingly toward not really existing as individuals. In chats with other researchers, I’ve found this to be a common experience.
Yesterday, though, things went a little differently. A man approached me while I was working on my laptop, editing my followup survey in a parked minibus and asked if I was very busy. Yes, I told him, but I still met his hand with my own. He asked if I was Jason Kerwin; I don’t know how he knew my name, but I guess there aren’t too many azungu busdrivers in Mwambo. He claimed to have been one of our respondents. I can’t say for sure whether he was, and didn’t try to verify his story. He said that he still had more questions about the purpose of our research, and that the enumerator hadn’t explained it to his satisfaction. This wasn’t a complaint – he was incredibly kind and polite, a big smile lighting up his thin face. I did my best to reiterate what was on the consent form, stressing that we’re there to learn about the HIV epidemic rather than to push some purported solution.
Seemingly satisfied, he then asked a question that caught me off-guard. If a cure for HIV is found in January 2013, he said, could we bring it to the respondents who are HIV-positive? We don’t do testing, I said, so we don’t know who is positive. Right – but maybe some of them told us they were positive, so then we’d know – could we bring it to them? I told him the truth, which is that the rules about identifying information in the study would make that hard. If a cure was found, we would need permission from the ethics boards, an exception to use people’s names for that purpose. That’s the same, I said, as it is at testing centers – they can’t use people’s test results for whatever they want, because it could turn out badly. But I told him that we’d definitely try to do that if a cure arose.
Then he asked his real question. “You’re getting a Ph.D., right? So you’re an expert? Do I think,” he asked, “that a cure will be found soon?” This was a punch in the guts. I didn’t know what to say. Thankfully, I was saved from having to figure that out by my study’s protocol, which forbids us to discuss HIV with respondents other than in very specific contexts. “I’m not a doctor or an expert on HIV, although I have studied it for many years. But I’m not allowed to talk about that issue with you because of the rules of the study. You should really ask a doctor or an HSA [health surveillance assistant] about that.”
In that situation, I honestly didn’t care about the rules of the study. This guy was a human being, and he deserved a candid response from me. At that moment, I would have been willing to ignore what I’m told I’m supposed to do and do the right thing. But I needed that rule, as a crutch. An excuse. A way to avoid telling him my honest opinion. Because the truth is that I don’t think a cure will be found soon. It’s optimistic to think that we will ever be able to cure this goddamned nightmare of a virus. How could I say that, though? How could I possibly tell this guy, one of the nicest people I’ve had the privilege of talking to, that HIV is an incurable death sentence? There is just no way. The right thing to say was not the harsh truth, it would have been to lie. And I’m an awful liar. So I leaned on the rules, shunted his question elsewhere. He didn’t argue, or even seem dejected. He thanked me with another big smile, shook my hand again, and went on his way.
So I started the car, pulled it slowly past him on the path, and took it around the corner to a point where he couldn’t see me anymore, so I could let my emotions out. I drove back toward the rest of my survey team. Bouncing over dusty roads, eyes wet, biting my upper lip.