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The issues surrounding CBPR and research ethics are complicated and frustrating. In "Partner-to-Partner" community partners share their experiences in addressing CBPR and research ethics.
McMillan and We Can
I wear a lot of hats. We Can - Pediatric Brain Tumor Network is a non-profit organization based in Los Angeles and we empower families to manage their medical situation and to become part of the "process" as their children go through treatment. There are almost 600 families in the We Can Network in California. I'm also on two IRBs at the University of California, Los Angeles (UCLA)-one as a community member and one as a subject representative for the cognitively impaired. I also sit on the National Cancer Institute's Central Institutional Review Board (IRB) that reviews children's cancer studies and am a member of a subcommittee for Secretary's Advisory Committee on Human Research Protections (SACHRP). UCLA was my first experience with an IRB and it took me two years before I finally began to feel comfortable doing my job. Two years is too long of a learning curve. As I became more involved with research issues and the review process, I looked back and wondered how things could have been done differently. Three years ago I began asking community IRB members and other non scientific members around the country how they felt about what they do, what goes on at their institutions, what they hoped for regarding their IRB participation. I asked specific questions about their "job product" and what would they change if they could. I began to see a big picture with recurring themes. I realized that people like me, lay members, were not being properly utilized in the committee process, not because the administrators or IRB chairs or other IRB members did not like us or appreciate us. They simply did not know what to do with us.
I have not seen a document that explains how the federal regulations translate to the committee table. The lack of this specific, practical instruction poses a problem. I want to know what's expected of me, how to do the job, and I want someone to tell me if I met the goals and parameters of the project. I came up with a list of what I could do as a non-affiliated, non-scientific IRB member to be more comfortable with that process. I knew I had to take the initiative-to empower myself, to truly become part of the process. I used the same skills that we teach to our families at We Can. I asked my IRB administrator for information I could use to educate myself-were there conferences I could attend? At conferences, I talked to other people like myself and identified specific needs. Input from these many people led to designing a "Community Member Track" for the national Public Responsibility in Research and Medicine conference (www.primr.org). Over three days, this track included workshops on the history of human subject protection, value and skills that a layperson brings to an IRB committee, a discussion of the psychology of a meeting, how to review protocol, and finally, a chance for community members to grill an actual IRB chair with questions. Every community member who attended the track received a certificate of competency and a letter was sent to the IRB chair at their institution congratulating them on the success of their community member at the PRIM&R conference.
I learned many things at conferences and I wanted to bring this knowledge back to UCLA. I made it easy for my IRB administrator to help me. I asked her to hold a community member luncheon for members of all five of the UCLA IRBs. More than half of the invited members and staff attended. We met each other for the first time and as a group, we came up with a "wish list" that boiled down to three things that we would want from the program at UCLA: a peer mentor, specific training, and a sense of community. These requests complemented what I had already learned from other community members around the country. I asked my Administrator to offer specific training. She designed a short curriculum that addressed "how to review a protocol" from the lay person's perspective. This evolved into a two hour workshop where community members are walked through the "review process". First, the administrator goes through each page of a sample protocol with the group and illustrates, inviting discussion, the kinds of things that lay people should be looking for. Then, as a group, the lay people have a chance to practice their new skills on another sample protocol. This workshop will be part of PRIM&R's 2007 Annual Human Research Protection Programs Conference.
In summary, I think there are five things community members want when they join an IRB: training, mentoring, respect, feedback, and a sense of community. It's important for IRB administrators to nurture community members' passion by getting them involved, teaching them what to do, and telling them when they do a good job. In turn, community members need to take responsibility for voicing their needs and helping their institution to help them, the laypeople, fully participate in the review process.
Beckham and WCCHC
The Waianae Coast is home to the fourth largest number of native Hawaiians in Hawaii and has long been a focus of researchers desiring to study native Hawaiians, collect data, and leave when funding ends. In 1990, The Waianae Coast Comprehensive Health Center (WCCHC), a Federally Qualified Community Health Center, entered into a joint research relationship with the University of Hawaii's Cancer Research Center to implement the Waianae Cancer Research Project.
Research Protocols, Principles, and Guidelines
McComber and the Kahnawake Schools
Diabetes Prevention Project (KSDPP)
Historical Context of the Mohawk People and KSDPP
As history demonstrates in Indigenous communities: "Outside research teams swooped down from the skies, swarmed all over town, asked nosy questions that were none of their business and then disappeared never to be heard of again."- Louis T. Montour MD, 1987. Kahnawake embarked upon a community-university partnership to create a program designed to be a different approach to research-research that would give back to the community.
With this kind of decision-making process, KSDPP set out to establish a code of research ethics. It came from the consensual decision-making that is part of Mohawk/Iroquoian culture, and it also came from the community-based participatory research world. The Code of Research Ethics explains the relationship for working with universities, researchers and institutional review boards. In KSDPP's experiences of working with new research proposals, there has been wonderful collaboration between KSDPP and its CAB and the institutional review boards. As a community, this demonstrates Kahnawake's interest in research and their efforts to ensure respect of community members, the community itself and a collaborative research process.