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.
6 thoughts on “My survey respondents are real people. It's too easy to lose sight of that.”
I’m surprised at you. Is lying _ever_ the right thing to do? Not to say that I don’t do it; I appreciate social lubricant as much as the next person in an awkward or awful situation . . . but though it makes it easier, I’m never left with the feeling that I did the right thing . . . whenever possible, I try to just shut up and smile (or whatever facial expression seems most appropriate, if any).
If you bothered to seek out an expert and ask, would you want to be lied to? I think _this_ is part of the reason you’re forbidden to discuss and given that _aid_ (or crutch) of being prohibited from discussing; lying is not the answer and telling the truth (in an appropriate manner, no less) may not be within your power or training–you are protected from having to choose which path to take and from attempting to take either path. ‘Cause you’re human, too, not just a big brain with charts and data.
I’m not sure if lying can be the right thing, but I think sometimes it might be. What I know for sure is that telling that gentleman the truth would have certainly been wrong.
Because he was nice, kind, genuine? If you sought out a researcher in a specialized area, would you want him/her to give you false hope because you seem like a good guy or would you want as honest answers as s/he could give so you could process the information and begin to act accordingly? Or to at least be directed to someone who would give you honest and “correct” answers in as much as the information is available? Should we direct doctors to lie to their patients if what they have is fatal? Should we not publish research if the answers are potentially depressing? The implications of allowing lying to be an acceptable solution are quite far-reaching, especially for research and policy . . .
Right, I’m very iffy on whether lying would have been okay here. But I think some third way, like not being allowed to talk about it, is definitely moral.
Interestingly, whether lying to people “for their own good” is acceptable, or even effective, is at the core of this project, although the lies in question are about other things, not a cure for HIV. And they are promulgated by other people, not me or my staff.
I occasionally wonder if “experts” should be allowed to speculate on aspects of science (or other topics) which are not their area of expertise. Just as wearing a uniform or lab coat makes someone an authority figure, so does being an “expert”–even if they are an expert on something _else_ . . . Having seen how students (both under my tutelage and “younger” classmates) are influenced by my clearly disclaimed opinions or musings, I worry about “casual chatting” once I’ve been established as “teacher” or “role model/mentor” or experienced guidance supplier/representative liaison in any capacity–and we’ve certainly seen media frenzies surrounding public figures’ unofficial and somewhat unrelated personal beliefs stated out loud… No answer can be very frustrating, but I worry wrong answers can be harmful, even when not presented as “fact” …
I can empathize, I’m also a terrible liar, and have taken this road before. Do you feel better now that you’ve shared here?
Something I think needs to be considered is that your opinion is only your opinion. Even if you have a hard and fast opinion, it can be watered down depending on who you’re speaking to. I don’t see that as lying, just sensitivity.