By Scott Maher
Researchers are often asked to investigate sensitive topics — things that are very private, personal, embarrassing, or even incriminating to research participants. This is an ethical minefield.
I’d like to share a story about something that happened at UX Australia’s Design Research 2017 conference this afternoon, as a way in to talking about the ethical challenges of doing research on sensitive topics. (Side note: the conference was fantastic. You missed out if you weren’t there, but you can catch up when they post audio and slide decks of all the presentations soon!)
A funny (and not “ha-ha”) thing happened at the conference
In the second last talk of the day, Mary Landrak* from ThinkPlace presented some examples and reflections from research in and outside of Australia. One of the questions she raised was about methods and truth, captured here in a tweet:
— Mimi Turner (@pocketv) March 9, 2017
To demonstrate this challenge, Mary then showed us two slides. The first contained the title “Ice (un)breaker.” And she gave us instructions for the activity: stand up, find someone next to you, ideally a stranger, and then, follow the instructions on the next slide. The instructions were:
Discuss with the stranger next to you:
When was the last time you engaged in risky sexual behaviour.
Here’s how that went for me.
When we were asked to stand, one of a group of three young women sitting in the row in front of me volunteered to be my icebreaker partner. Very kind. The only other person in my row was four or five seats away.
When the icebreaker prompt was shown on screen, a lot of chatter broke out in the room. We looked at each other and both began to blush.
Me: Well, this is awkward…
Her: [silence, looks at the screen, then at me, then at the screen]
Me (and this is my first big mistake): Uh, [nervous laughter] you go first.
Her: [silence, looks toward the other women in her row, looks at feet, looks back at me]
Me: No, you don’t have to…
Her: Well, last…[quickly tells me an answer to the prompt, then looks away, then looks back at me with what appears to be a fair bit of anxiety on her face]
Me: Oh, wow… uh, um [thinks ‘oh crap, what do I do now?!?’]. Oh, time’s up. [nervous laughter, sits down, feels shame for several minutes]
It was a visceral experience of just how uncomfortable it can be to talk about something very intimate with a stranger.
The prompt is loaded with layers of meaning: it asks participants to not just discuss a sexual experience, but specifically to talk about “risky sexual behaviour.” That’s even more loaded with moral baggage. Framing sexual behaviour as “risky” already positions it as morally wrong and irresponsible. And risky sexual behaviour may or may not be consensual: being a victim of sexual assault could easily be construed as “engaging in risky sexual behaviour.” In terms of ‘intimate truths,’ this is heavy stuff.
Let me pause here to do what I should have done in the moment:
I apologize to the anonymous stranger who volunteered to join me in an icebreaker activity and who may feel embarrassed, intimidated, or worse as a result of the interaction. I wish I had been more aware in the moment of just how bad it was for me to say: “you go first.” I regretted it almost instantly, and am sorry.
In our society, an older male telling (not asking) a younger female stranger to “go first” in divulging private, intimate information is not cool. I don’t think I need to explain here how it reflects male privilege and patriarchy.
The ethics of the ice (un)breaker
I can see both sides of an argument about whether this activity was appropriate for a conference.**
On one hand, I appreciate the chance to experience first-hand the discomfort and stress that research participants might feel. I’m a big fan of experiential learning, and given that researchers are often more privileged in general than participants (and as I’ll discuss below are almost always so in the context of research), intellectually discussing the discomfort a participant might feel is not likely to be as effective. I hope all of those present will remember this experience and use it to have more empathy for the research participants we depend on for our livelihoods.
On the other hand, we were given no advance warning that we might face a difficult situation during the talk. None of us could have consented to the activity, because none of us had any prior information it was coming, and the context and manner in which it was presented gave little opportunity to opt-out.
Further, what active teaching might have accompanied this moment was lost in the din of a crowd of researchers chattering awkwardly (and for some, with mild outrage). This could have been executed much better than it was — and even with prior information and a reminder that we could opt-out, it may have been an effective active learning experience.
I do appreciate that this experience gives me an opportunity to reflect on the ethical challenges raised in researching sensitive issues, and to write something that may be useful to other researchers.
Making this meaningful
Taking today’s experience and applying it to research on sensitive topics in general, I think there are three key things to cover: informed consent, privilege and power, and the risk of harm to participants.
As far as I’m aware at the moment, it’s virtually universal that research involving humans requires participants to give informed consent before the research begins. People must never be compelled to participate in research activities (so, research with prisoners and other marginalised people is particularly high risk in ethical terms).
They must have sufficient capacity and information to freely agree to participate in the research (so research with children requires more careful scrutiny, and deception about the purpose, process, or topic should be avoided unless it is absolutely necessary and the benefits outweigh the risks).
Researchers must also always recognise and respect the right of research participants to not answer a question, to not participate in part of the research, or to end the interaction altogether. No means no, and stop means stop. And we must not penalise participants for exercising this right.
Privilege and power
As researchers in businesses, governments, non-profits, or academic institutions, we often feel less-than-powerful. We’re typically small (underfunded, underappreciated) fish in a big pond.
In interactions with research participants, things are different. Where participants are promised incentives, we may appear to hold the power over whether they receive the incentive — thus making people feel compelled to continue through discomfort or distress, even if we don’t intend it.
As representatives of corporations, governments, universities, or other institutions, we may also carry the air of authority and power by association. In those instances, we are the institution, and the participant is often much smaller and less powerful — they are patients, customers, citizens, employees; Davids to our (implied) Goliath.
We must always remember — as I obviously forgot in today’s icebreaker — the role of gender, age, race, status, education, position, ethnicity, etc, etc, in shaping the relationships, even (especially?) fleeting ones between researcher and participant. Are there social and/or cultural forces in play that disempower participants and empower researchers when it comes to the information produced in our interactions? Yes, always! And be careful you don’t exploit those.
We must remember that as researchers, we are not extracting confessions like the CIA or the Spanish Inquisition. We must behave in ways that realise the inherent human dignity of research participants. We have to hold ourselves to a higher standard in the context of research than we do even in our day to day lives.
Do no harm
The Do No Harm principle is huge and complex in itself. It’s the first of the seven Principles of Professional Responsibility of the American Anthropological Association (AAA) for good reason. It’s also an area of significant ambiguity, which allows for debate and should guide deep consideration for any human research project. I would argue it should also be a guiding principle of business and innovation, but that’s a bit out of scope for today.
For the AAA, researchers must carefully consider what harm might come of a project before starting any research, and they must continually assess whether the risk of harm changes during the course of a project. They also recommend that “anthropologists should not only avoid causing direct and immediate harm but also should weigh carefully the potential consequences and inadvertent impacts of their work.” This holds whether the research is a purely academic endeavour, or intended to bring about some sort of positive change in the world. Unintended consequences can be just as — if not more — harmful as intended outcomes.
Harm can be understood and measured in many different ways — physical harm like inflicting temporary pain or doing longer term physical damage are the easy ones. Much more difficult are cases where social, emotional, or psychological harm may be involved. Are you discussing things that a participant would be embarrassed if other people found out about them? Then you need to be extra careful with confidentiality, at the very least. Are you asking people to tell you about traumatic experiences from the recent or more distant past? Red flags here!
Even when research is intended to support outcomes that improve participants’ and other people’s well-being, researchers and our sponsors/clients must weigh the potential benefits of a research project against the risk of harm to participants. Academic research ethics boards often do this very conservatively, and in that setting research is most likely intended to produce social good. In business settings, we should be weighing the risk of potential harm to research participants and customers (heavily) against the potential benefits to society and the business.
So what do we do about ‘intimate truths’?
Getting back to the methodological and ethical question at hand — we know that there are many reasons to conduct research about topics or experiences that might be sensitive, uncomfortable, or inherently risky to discuss. So how do we go about it, ethically?
Can we get intimate truths in an exploratory interview? Maybe. Can we do it without imposing our privilege and exploiting participants, however subtle that may be? Hmmm.
We must respect the dignity of participants, and their right to informed consent and to withdraw from research at any time. We must also be prepared to mitigate harm done by the research we undertake — and not just in terms of liability to ourselves, our clients, or our institutions.
Where researchers need to uncover intimate truths about people’s behaviours, attitudes, and experiences, we must be prepared to invest time and energy in developing trust. Trust is what makes it possible for people to share accurate information with us about their intimate lives, their secrets, their insecurities. Trust — not power — helps us get at truth.
To develop trust, we almost always need to develop relationships and engage in reciprocity, with patience, sensitivity, humility, and most of all respect for the people whose lives we enter.
Fortunately, several of the talks at today’s conference highlighted these points. It’s a good start.
*When I first published this essay, I also wrote to Mary directly to thank her for her presentation and tell her about my mixed feelings with the activity she used. I also wanted to send her a link so she could read what I had written.
Mary’s reply was thoughtful and professional, and she both clarified her intention and owned her misjudgement of the audience’s response. She acknowledged that the exercise had gone very differently for some of us than she had expected when planning it, and that she regrets the offence it caused.
She also explained that her intention was to highlight the complex challenges we face as researchers when we need to elicit and explore deeply personal experiences and behaviours. This activity was meant to be an engaging moment for the audience at the conference and a means to open up discussion.
With the benefit of hindsight, we can all say that this situation could have been constructed differently to achieve those goals.
**UX Australia, in their event wrap-up email, apologised to attendees for any discomfort caused by the activity. They noted in the email that they have processes in place to prevent this sort of thing, including asking “all speakers to discuss with us anything that might be sensitive or cause discomfort for attendees.”
They also wrote that “We have spoken to the speaker about it and she is not welcome to speak at one of our events again.”
This post originally appeared on Medium.com.