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Moving Beyond Institutional Review Boards: Community Advisory Boards
In many ways we are much better off having IRBs in place than not having these boards acting to evaluate whether proposed research is consistent with ethical guidelines. IRBs add an important layer of protection. Prior to their existence, researchers carried out whatever studies they judged to be scientifically significant and they often did so without obtaining informed consent and without adequately debriefing people or ensuring that their rights were protected. Many excesses occurred ostensibly in the name of science. So, IRBs add to the protections that now exist.
But IRBs are not designed to do everything that we all assume they do. In particular, they don’t address many of the issues that are central to the concerns of community university research partnerships. These concerns include:
- Community input on research design, study implementation, and data analysis.
- Community oversight of the design to ensure cultural sensitivity and responsiveness.
- Questions of who owns the data and what will be done with the data.
- Questions about whether adequate attention has been given to whether the benefits for the community (as opposed to the individual) are sufficient.
- Giving back to the community in any way or ensuring that the results are used by and useful to the community.
Suppose we designed a very nice car (bear with us on this—there is actually a point to this example!). The car may be great car (runs fine, gets good mileage, is bright red) but that still doesn’t make it an airplane. If what we need is something that can cover great distances quickly then no matter how good the car is it still isn’t a plane. Same holds true of IRBs: when they run well they may be very good for what they are designed to do but unfortunately they are not designed to do everything we need to ensure ethical research partnerships.
Many people are increasingly trying to solve this problem of how to have review boards that are better equipped to address the larger questions that are being raised about the ethics of research partnerships. In trying to solve this problem, people are focusing in on a number of issues with IRBs:
- Is part of the problem one of composition of IRB boards? That is, IRBs are made up mostly of researchers and is this perhaps similar to “putting the fox in charge of the hen house”? If we change the composition of the boards, will this solve problems and, if so, which ones?
- Is the problem one of focus: IRBs focus on the individual, on informed consent, and on the particulars of the research process. They don’t focus on how the partnership is set up (or even whether a partnership should be in place). They don’t concern themselves with questions about what will be done with the findings or who owns the data.
- Is the problem a result of a focus on individual studies as opposed to multiple studies? Many proposals to IRBs (but not all proposals) focus on a single study proposed by researchers. There is often little in such a proposal that orients the reviewer to concerns about building long term relationships.
- Is the focus too much on internal validity and not enough on external validity? In other words, is the focus too much on the quality of the design (and ensuring safeguards are in place given that design) and too little on what will be done with the findings and whether the findings speak to issues of pressing important to those in the community who will use the research?
- Is the problem that IRBs do not give consideration to how the research will be used to make changes?
Innovations!
Where are innovations taking place? Important advances are being introduced in North American Native American tribal communities as well as the Detroit, Michigan Partnership in the United States. When we look closely at these examples we see some intriguing changes and new requirements that move much closer to some of the goals important to community university partnerships. When we look at these examples we see, for example, that the approval process has been transformed. Rather than the research institution providing the stamp of approval, the community board does this. And the community board put into place a different set of requirements, requirements that can include a focus on data ownership, on uses of data for amelioration and improvement, and on final decision making that is in the hands of the community.
Before we conclude that it makes sense to require community review boards everywhere and on all occasions, it is probably useful to think about what might be unique about these two situations (tribal nations and funded research centers). In both cases, one can get one’s hands around the situation. A tribal nation can decide what it will do. It has defined responsibilities. To some degree this is also true of the Detroit Center (with its defined roles and responsibilities). But, the Detroit, Michigan Center even adds to this. The Center example reminds us that part of what is workable about the model is that all the research, in effect, comes in through one door in the Detroit case. Anyone who wants to do research in that neighborhood and with the resources of the Center must receive the approval of the center board.
Most cities and communities face a far different situation. Researchers are coming in and out all the time. No one really knows when some new researcher has come to do research. The situation is highly fluid. We need, then, to design some strategies that might work in this more fluid situation (a situation which is very common). New possibilities need to be invented. What might they be? What might be some alternatives to institutional review boards that could realistically be implemented in many of the communities and situations with which you are familiar?
Expect that not everyone is going to embrace the idea of community advisory boards:
Consider this response on the part of researchers to institutional review boards and the like. In the journal Psychological Science (one of the leading journals for psychological researchers), a special issue was published in the last year or so that repeatedly made the point that some researchers believe that constraints on research have gone too far. In their view, less oversight of research is needed rather than more. In particular, these researchers object to nonpsychologists being allowed to assess whether proposed research has sufficient scientific merit that is should be approved by an institutional review board. This example is fascinating and is probably worth keeping in mind. These researchers are focused on the obstacles they perceive as standing in the way of producing pure science and good science.