Community engagement can make research more relevant, responsive and trustworthy. It involves building relationships with people and communities affected by the research and incorporating their perspectives into how the research is designed and conducted. But what ethical responsibilities do researchers take on when they ask communities to participate as partners?
This question was at the heart of this year’s Research Ethics Conference, “We’re Engaged!” Ethics and Engagement with Communities in Research, held in September at the Fulginiti Pavilion at CU Anschutz. Researchers and community partners shared their experiences with community engagement, including the challenges they faced and lessons they learned along the way. The conference was sponsored by the Colorado Clinical and Translational Sciences Institute (CCTSI) and the Center for Bioethics and Humanities.
“We really wanted researchers to understand the big picture of the ethics of engagement, that even if it's the 'right thing to do,' there are 'right ways to do it,'” said Matt DeCamp, MD, PhD, director of Research Ethics and associate director of Community Engagement for the CCTSI.
This year's keynote speaker was Emily Anderson, MD, MPH, professor at the Neiswanger Institute for Bioethics at Loyola University. She presented an ethical framework for community-engaged research, emphasizing that community engagement isn't an “ethical quick fix.”
Instead, she said researchers take on additional responsibilities when they engage communities. These include communicating openly, keeping promises, sharing decision-making power and responding to community input.
Anderson challenged researchers to think beyond existing rules and regulations. She described those requirements as a minimum "floor," rather than the ceiling of what ethical research requires. As one example, she pointed to returning study results to participating communities.
“Communities want more than just a seat at the table. They want influence and voice,” Anderson said.
Later in the day, researchers and their community partners shared experiences from projects involving tribal sovereignty and genetic research, youth mental health care, community-engaged research in the San Luis Valley and youth-led research in Aurora.
CU Anschutz Professor Katrina Claw, PhD, and former Navajo Nation Council Delegate Walter Phelps introduced themselves in their Native language. Claw explained that introducing oneself in this way helps establish relationships with other Native people.
Claw and Phelps discussed how tribal sovereignty gives tribal nations authority over research conducted on their lands. The Navajo Nation placed a moratorium on genetic research in 2002 until culturally appropriate policies could be developed.
Phelps later helped establish a working group to develop a Navajo Nation genetic research policy, while Claw co-led research gathering Navajo perspectives to help inform those discussions.
Kiersten Johnston, MPH, program manager for the suicide prevention nonprofit Rise Against Suicide, and Tamar Kodish, PhD, assistant professor of psychology and neuroscience at CU Boulder, discussed their partnership to address barriers to youth mental health care. They described ethical questions around privacy, community needs and the urgency of suicide prevention.
Johnston and Kodish described trust and relationships as central to their partnership. When therapists, parents and youth raised concerns about plans to record therapy sessions for research, the team adopted a less intrusive approach to collecting data.
“Let’s prioritize trust and relationships, even at the disservice of scientific rigor, in this particular moment in time,” Kodish said.
The partnership also highlighted the mismatch between the urgency of suicide prevention and the slow pace of research. Johnston and Kodish continued their longer-term research while offering more immediate resources to the community, including parent workshops.
Once the conference was over, DeCamp reflected on the enormous time, effort and flexibility required to build successful community partnerships. Yet, these efforts can make a difference.
“Across all the presenters, it was notable how rewarding engagement can be and how much it improves science when it’s done well,” he said.