Building Ethical Infrastructure for Community Partnership Work: The ‘How to Engage Your IRB’ Edition
by Breanne Litts, Melissa Tehee, and Nicole Vouvalis
Our community needs to rethink the relationship between researchers and IRBs. Partnering with communities means doing more than inviting them to provide data to researchers for their projects. Research should make sense to and benefit the communities in which it takes place. Research must not be harmful to communities, and the community should decide what is and is not harmful. The definition of “research” in an IRB process should be broadened. A key goal of bringing your IRB to the table is to increase mutual accountability among partners. Researchers and IRBs can unite under the shared values of relationality, reciprocity, and respect.
As principal investigators and researchers on several projects that aim to explore collaborative approaches to research, we maintain a range of partnerships, such as K-12 schools and educators, Tribal Nations and Indigenous communities, and out-of-school organizations and educators.
Many of our projects seek to design and develop school curricula or community programming and culturally sustaining technologies and resources. One example is a collaborative effort toward designing a new family program. The family program seeks to reconnect the land with people through sharing and preserving knowledge with original and digital technologies.
While each project and partnership is unique and special, one overarching relationship that heavily shapes what is possible with our community partners is between our research team and our Institutional Review Board (IRB). The IRB is a mechanism required for all federally funded research that collects data from or about people. While this relationship may remain largely invisible to non-university collaborators on a team, it is irresponsible to ignore the ways in which IRBs shape partnerships among researchers and community partners.
The story we share is the journey that Breanne Litts and Nicole Vouvalis took toward building infrastructure at Utah State University (USU) that honors tribal sovereignty. Breanne Litts is a learning scientist with expertise in designing storytelling technologies for learning with Indigenous communities. Nicole Vouvalis is a research administration professional with expertise in law, human research protections, DEI, and higher education administration. Melissa Tehee, an internationally recognized research ethics scholar with decades of experience serving Tribal Nations, served as an advisor to Breanne and Nicole throughout the process. Melissa provides commentary to bring to light the nuances of partnering with Indigenous communities on research projects.
What Counts as Research?
Breanne: I first approached the IRB prior to receiving any funding or even proposing any grants. I had been working with a Tribal Nation for a year or so and we had begun working together toward building family programming for their community. In my field, the process of partnership and design is of high scholarly value. The Tribe I was working with had a vision to share our work not only with other nations but also with other researchers. I had asked around to learn how others had navigated their institutions’ IRB at this stage and was shocked to learn that many institutions did not consider this work research, and thus, their partnership had no oversight. So, I reached out to Nicole Vouvalis, who is director of our IRB at USU.
Nicole: People who work with and for IRBs, myself included, are trained in a very particular way of thinking about what “research” with a “human subject” is. I think that if you brought any of Breanne’s projects to an IRB at a university with a medical school, you’d get the response Breanne noted: this isn’t research and it doesn’t fall under our purview. If I’m being honest, I think some of that is because this work is intricate, complex, and iterative. If there’s a way to wash your hands of it and justify that to anyone who might come knocking, you might take that “out.” (And resource constraints, systems constraints, and lots of other good reasons that could be at play!)
For my part, I try to deeply consider all of the principles in the Belmont Report in terms of my office’s operations. The most important to me and to my office is “Justice,” though “Respect for Persons” and “Beneficence” both also feature prominently in our work. For me, to enact the principle of “Justice” means not telling a Tribal Nation and their collaborators what research does and does not look like. If Breanne and her research partners come to us saying they’ve worked out a research partnership, we’re going to treat it that way.
Melissa’s commentary: When engaging with community partners, defining “research” is imperative. Generally, partnership projects may be shaped by various stakeholders involved in the work, however, rarely the team, as a whole, steps back to define what research is in the first place. Additionally, when working with Tribal Nations, we must recognize and honor Tribal Sovereignty and uphold Tribal views of what constitutes research, which may begin with developing the relationship long before what the federal definition would deem as research. For example, in building relationships, Tribal entities are often opening up their space and ideas but the potential researcher is not as vulnerable in the beginning and thus holds the power to decide when to engage an IRB. There can be harms that occur during relationship-building and idea-generation phases when there is no oversight or accountability for the researcher.
Honoring All Voices
Breanne: As I continued discussing possibilities with Nicole, I was also in conversation with the Tribal Elders working on our project who wanted to be active members of our research process and wanted to leave the door open for other tribal members to become researchers as well. I began to realize that current infrastructure gives researchers the power to make the determinations of who counts as a researcher, yet this concentration of power is antithetical to the collaborative research process we were working to define. When I first approached the IRB, the question was, “Is this research?” But after a lot of back and forth, I realized the question needed to be: “How do we protect community partners and honor their sovereignty and self-determination in the research process?” At the end of the day, I really did not care if it’s research according to some obscure definition, and rather, I wanted to be held accountable to my values of maintaining reciprocal and respectful relationships with the community partners working with me. Thankfully, Nicole was very open to this reframed question.
Nicole: In the moment, one of the reasons I took to that reframing of the question was partially, “If not us, then who?” This partnership did not have another IRB or research ethics oversight committee to go to, but the direction of their work made it clear that this could be necessary to meet their goals. Why shouldn’t we be that? Utah State University is Utah’s land grant institution; part of the mission of everything everyone does here should be about how we support and better our communities. In talking more with Breanne and learning more about the project, my perspective became broader. We’re a justice-centered IRB. That’s the vision for this work and this office that I articulated when I was hired, and I made clear that if that wasn’t the direction USU wanted to go, they should find someone else. Like Breanne, I want my work to be accountable to my values, the vision I prioritize for this work, and the mission of our institution. The opportunity to not just oversee, but partner with Breanne and this Tribal Nation is in line with those values, my vision, and the institution’s mission.
Melissa’s commentary: Researchers have inflicted horrible atrocities on Indigenous people in the name of “science” and these are why Tribes have sought to have oversight of research being conducted with their citizens. When considering community and partner-based research, there are very few written procedures and guidelines from IRBs that require input from the communities or partners. Those from outside the academy are often not reviewing the protocols submitted to the IRB, nor is there follow-up with them unless someone has reported an issue. Having worked with many university IRBs, not all know about when they need to consult Tribes to see if the Tribes view the activities as research or if they would also like a say in the activities or oversight of the research, in which they may have procedures or a Tribal IRB. Indian Health Services and many Urban Indian Centers also have research policies and mechanisms for engaging with research activities. I have had to engage in uncompensated work to educate both PIs and IRB staff on this topic.
Breanne: The paradigm shift from “Do we need IRB?” to “How can the IRB help us enact ethical and cultural values in our work?” opened up a flurry of possibilities, but also united us (my team and the IRB) under the shared values of relationality, reciprocity, and respect. These values not only grounded our partnership with the Tribal Nation but also opened the door to a new kind of partnership with the IRB. Building upon these shared values, we could now define how the IRB can be a fundamental partner in shaping structures to support ethical and culturally respectful engagement with not only Indigenous communities but all community partners.
Nicole: While IRBs operate in different ways and according to different ethical principles, most IRBs in the United States choose to enact the principles of the Belmont Report. The three primary principles articulated in that report, which is a culmination of the yearslong study of abuses in federally sponsored research, are Respect for Persons, Justice, and Beneficence. In talking more with Breanne about the ways we could support this partnership, I learned that those map pretty well with the values Breanne articulated above reciprocity, respect, and relationality. Because we chose to abandon the question of whether IRB oversight was required, and shifted our perspective to a justice-based approach, we began to think about what an infrastructure (largely free from the constraints of other regulations and rules, since an argument could be made that IRB oversight wasn’t strictly necessary) that centered those values could look like. That was a really exciting time.
Melissa’s commentary: From an Indigenous perspective, we are taught to engage with the world (which includes partnerships) with Relationality, Reciprocity, and Respect. We are all interrelated to one another as we share land, an environment, a community, spaces for learning and working, and are all in relation to one another. Our relationality goes beyond humans and “living” beings and includes all beings, which is often overlooked by the larger society. Values are often more expansive than principles, but the foundational value of Relationality most closely represents the ethical principle of Respect for Persons and Peoples. We come from a worldview that is community-focused and not focused solely on the individual. We consider how decisions and actions will affect the community, thus never focusing on benefits to just ourselves. There are no decisions that only affect the individual making the decision, thus we value and recognize the ways in which we are all connected. Our value of Respect closely aligns with the principle of Justice. When we enact respect, we are showing that we value different ways of knowing and being, and this includes valuing community knowledge and approaches. Our value of Reciprocity ties in with Beneficence, though it does go beyond “doing good.” A few of the ways we enact reciprocity are making sure everyone has the opportunity to contribute; balancing the give and take; and sharing both contributions and benefits.
Building Ethical Infrastructure Together
Breanne: With the foundation of shared understanding and values, we got to work on the following:
Essentially, rather than adopting the existing binary research frame (e.g., yes this is research/no this is not, or you are a participant/you are an investigator), we crafted infrastructure together that allowed for plurality of meaning and participation, which mirrored the actual human experience of participating in research, especially education research. At the end of the day, humans are messy and imperfect. Therefore, we need a flexible and fluid infrastructure to support ethical partnerships.
Nicole: We decided not to assign partners to particular boxes; instead, we discussed that we also needed to set the partners up for success, no matter the roles they chose or moved into as the project went on. This brings us to Breanne’s second point, the video-based training. While there are other fee-based trainings available (CITI, rETHICS), part of the purpose in engaging in this new, specialized structure was to make sure that we, the IRB, were sharing our resources with our partners. Another purpose, though, was to make sure that those resources were centered in our values. We didn’t see CITI and rETHICS meeting those needs. So the team developed a new training, so that we could be certain that the whole structure we were creating spoke to those values and set everyone up for success. Once that was complete, I incorporated the values and actions into a draft MOU (Breanne’s first point); we revised it many times over before distributing it for execution, to make sure that (like the training), we were developing an infrastructure for everyone to be successful in contributing to this partnership.
Melissa’s commentary: When considering ways to be more inclusive to community and Tribal partners in research, you must consider the value and cost with adding more requirements for the participants. The typical research ethics training is formatted in an academic way, which might not be the best way for those outside of academia (or inside) to learn. For those outside of University systems, there is often an additional monetary cost, along with a time commitment, that is usually uncompensated. We didn’t agree with this cost structure, so we designed a free training. The needs and purpose of the research ethics trainings are different for different types of research and different investigators. The training developed by Breanne and her team uses best practices from the learning sciences to present the information in accessible and relevant ways to both community and Tribal research. With Nicole contributing to identify needed knowledge and competencies to meet IRB requirements and the IRB then adopting this training as another option, they are sending the message of valuing Tribal and community contributions.
Moving Toward Adaptive and Responsive Partnership
Breanne: I often conduct research that requires IRB oversight and find that conversations with IRBs can be challenging. For example, if you go into an IRB office and ask for help collecting video data of children, all sorts of red flags go up for them. You’ve stepped on an ethical landmine and you might not even know it. I’ve watched this happen to some of my students and colleagues in their IRB consultations. What has been refreshing, though, is how engaging the IRB according to our values of relationality, reciprocity, and respect has shifted our partnership toward an interdependent and mutually beneficial goal of doing ethical research. I don’t think this is the easy path to research but the deeper our partnership gets the more I realize this is the ethical path and the result is better for everyone involved, especially community partners. We are inviting people to do the work necessary to protect the partnership through establishing accountability toward ethical research processes. This is even more critical in technology development projects when working with communities that have not only been harmed by research but also technology.
Nicole: For me, our relationship provides a model for our IRB’s work with researchers who approach us about their research partnerships from the get-go. I deeply appreciate what Breanne said above about setting up a structure for engaging communities without involving them in those conversations. I remain surprised at the number of research projects we see where all these plans are laid out for the research approach, without any evidence that the community has been contacted or has a say. And, since we work with these projects from the start to the end, we also see where those kinds of projects falter. Having engaged in this process with Breanne (and a handful of other researchers at USU, though not to this extent!) allows us to demonstrate what can, indeed, be done with some advance planning and a meaningful, dedicated approach to centering research participants.