DURING DECEMBER of my first semester as a doctoral student, I spent two weeks in Japan doing preliminary fieldwork. My goal was to work with disaster refugees, those displaced by the March 11, 2011, triple earthquake, tsunami, and nuclear meltdown in Japan’s northern Tōhoku region. I thought my research could shed light on their struggles, providing insight for meaningful interventions. I was able to connect with a victim advocate volunteering at a shelter in Japan’s western Niigata prefecture. I asked if he would be willing to put me into contact with some of the victims so that I could hear their stories. He scowled at this, meeting my request with a challenge:
“What do you want to learn from them? Most are still living in shelters. Most lost family. What can they tell you? It’s painful. It continues to be painful. It’s obviously painful. Most just want to move on. But they can’t forget when people keep asking them to relive it. What can you do for them? How will their reliving the disaster help you help them?”
This exchange drew my attention to the potential cost of my research. Regardless of my intentions, pursuing the project as I envisioned it would require my collaborators to relive their suffering. Asking these people to share their stories represented an emotional and physical expense. What would they be able to buy with that cost? What would I provide them in exchange for their service? Sure, I could use their stories to fuel my doctoral project, complete my degree, write a dissertation (in English, then translate to Japanese), teach a course at a university thousands of miles away. Maybe I could write some articles for Japanese journals or magazines drawing attention to their plight. But what appreciable and timely impact would that make on the current situation my potential collaborators faced?
His questions cut deeply: I didn’t have a satisfactory answer to how this research would justify the cost. Ultimately, this encounter led me to walk away from the project. I didn’t feel I had the experiences or resources to reciprocate my potential collaborators’ investment of candor and pain. Whether or not this was the right choice, I feel it was the most ethical decision I could make at the time.
I’ve had the opportunity to reflect on this crossroads often in teaching research methods to undergraduates, in mentoring junior researchers, and most recently in designing data-driven interventions for small businesses and non-profits in the US and Japan. In doing so, I’ve come again and again to the importance of care as the cornerstone of ethical research. By opening up their lives, collaborators care for researchers. By using their experiences to craft meaningful change, researchers are able to reciprocate that care to collaborators and beyond.
I see human-centered research as a circle of care linking researchers and collaborators. The ethical commitments that give this circle shape and consistency are like the spokes of a wheel. I want to briefly consider three of these spokes:
Research is a sustained moment of vulnerability for those who collaborate. Even with all of the data protection and assured anonymity, it is an uncomfortable thing to be studied, to have aspects of your professional, social, and personal life on display and dissected by a stranger. Empathy is critical. Researchers should develop and employ an approach mindful of the needs, desires, and vulnerabilities of participants.
When people share part of their life with you, you share with them. Be aboveboard about the research process and its objectives. More importantly, make goals and the research designs a collaborative process. Research alongside participants by creating a seat at the table for them and weaving education into the intervention. Through transparency and investment, researchers can work to empower collaborators so that healing outcomes can be maintained and expanded in the researchers’ absence. In this way, researchers collaborate with participants to design sustainable interventions.
Research that relies on people can – and I would argue should - seek to make an appreciable difference in the lives of those people. Researchers should take pains to develop a deep understanding of the context in which they work. I’ve often found that the goals dreamed up in the office don’t reflect the reality on the ground. Researchers should be flexible to the needs of their collaborators, designing protocols and synthesizing actionable insights that pursue better outcomes for those actually in need of a helping hand.
Working with human lives necessitates an abundance of care. While I don’t think you can be fully prepared for all the curveballs entailed with working with complex communities in complex environments, I do think you can consistently find your bearings when you make caring for others your priority. I believe researchers have an obligation to care for those who make their research possible, to not exploit their pain, to be transparent, and to work to make their lives better. I believe researchers can honor this obligation by designing mindful, equitable, care-focused interventions.
I see our work at Psyince as extending this circle of care. As a team of scientist-practitioners dedicated to human-centered research, we work with institutions and organizations composed of diverse and complex people, all of whom have varied needs, wants, fears, and ambitions. Our goal is to meet and understand this complexity, and then work to collectively improve outcomes. This collaborative approach necessitates centering empathy and care.