Community Oversight Board Amplifies the Voices of Research Participants
Research has led to the discovery of answers to important questions to improve people’s lives, including cures and treatments for countless diseases, such as cancer, AIDS, diabetes, and polio. And the ability to engage human participants in that research is critical for making and advancing these discoveries.
International and federal regulations, state laws, and institutional policies are in place to protect research participants, including Institutional Review Boards such as the University of Minnesota’s IRB. Many of these protections came about as a result of historical abuses of research participants and their rights. And for many communities, including communities of color, this historical trauma continues to be felt when it comes to trusting research and researchers.
To address some of these concerns and to provide additional protections for underrepresented communities, the Community Oversight Board, an independent, volunteer committee, was formed in 2016 to help ensure that the voices of all people and communities participating in University of Minnesota research are heard. Paul Mattessich, executive director of Wilder Research and chair of the Community Oversight Board, observed that “while many entities oversee human research, the Community Oversight Board is unique in its independence from the University and in its charge to provide feedback and raise concerns from the point of view of the community.”
The committee, composed primarily of unaffiliated academic, professional, and community experts, meets quarterly to discuss and advise the University on a range of topics, including research policies and public-facing materials. In addition, the committee can serve as a “watchdog” for arising issues, helping to ensure that the University is aware of community concerns and is held accountable for responding to them.
In order to fulfill its charge, the Community Oversight Board has been working hard to learn about community members’ concerns, engaging the public through a community forum and outreach at the State Fair. Feedback provided by community members has included calls for enhanced communication about what research is happening and concerns about confidentiality and privacy. Another common theme has been requests for improved practices related to sharing the results of research with participants and their communities. One research volunteer summed this up by saying, “I want to know the difference that I made.”
The committee understands that it can most effectively identify and address concerns like these when its members represent a broad range of perspectives. To that end, the group is working to increase its membership, especially among individuals who represent diverse racial and ethnic perspectives, have experienced living with a disability, or live outside of the Twin Cities metro area. The Community Oversight Board looks forward to continuing to contribute to creating a positive environment for research that will benefit all stakeholders and welcomes new voices to the table to help with this important work.
To learn more about the Community Oversight Board, or if you know someone not formally affiliated the University who may be interested in serving on the board, contact Bethany Hansen at firstname.lastname@example.org or (612) 624-4490.