Twice a year our HVTU CAB (HIV Vaccine Trials Unit Community Advisory Board) meets for fun and to review our mission as a CAB. Part of what we do as a CAB is review the development of HIV vaccine research protocols to the extent that they involve the general public. Whatever information the general public should have access to when they are considering volunteering to participate in HIV vaccine research, we also consider and advise about whether it contains the information necessary for a person to make an informed decision as to whether to participate in the experiment.
To me, it seems like a volunteer CAB should be a social institution integrated into any kind of human research, but in fact most research rarely uses them. A CAB is distinct from an IRB (Institutional Review Board), which is a professional set of reviewers who ensure that the experiment complies with legal standards. Legal standards are not necessarily comprehensible to all persons who might be legally fit to sign their consent to research. Also, what is legal may not be ethical; persons who join clinical research often come from vulnerable populations and only community members who are more disconnected from the research motives can judge whether clinicians are asking too much of their test subjects. Every member of any CAB would have their own explanations of its need for existence; I have others but the ones I stated come to mind first.
When I first joined this CAB in summer of 2007 I did not know much about research, but now I am beginning to appreciate just how powerful of a social investment it is to foster a connection between community members and researchers. The researchers have a list of demands for data – typically they have a drug and they want someone to take their drug and then provide blood samples periodically thereafter. The researchers typically have no contact with the people who provide the blood samples. There is a study recruitment team that encourages people to participate in the study. Ideally, these people would understand the research, but in practice, the skill set that enables one person to convince another to volunteer to take experimental drugs is unrelated to those skills that invest a person with understanding of the research. I happen to think that our recruiters understand the research, but I have seen situations where corporations have trained their recruiters to use sales technique to reel “volunteers” in and rewarded their recruiters with financial bonuses for high draw rates. Again, FHCRC does not do that, but some places do, and although I do not think this is inherently bad practice, the added complexity does increase the likelihood of corruption in the system. In any system that I can imagine, a CAB could do well to advocate for the community with the major drawbacks being the need to attract and train CAB members and the need for researchers to take the CAB’s advice seriously. I am happy with the status of the CAB that I am in because I feel we make a difference with minimal effort from our end.
This CAB retreat we just had followed a simple but pragmatic formula. The first item on the agenda is coffee, then a review of our relationship between the CAB (us) and the HVTN (the organization which we review), then training about how to do our work, and ending with a review of HIV epidemiology, which for most of us the topic that caused us to get involved in the CAB. Looking at this agenda now after the event is over it seems obvious that we should talk about these things and to do things like this. CAB participation is a 4-6 hour per month commitment; what else should a volunteer organization like us do?
I am blogging about this for others who might be interested to learn what it means to review research, and how decisions get made in high-budget, high-profile multinational research projects. In different places, a group of community members with no particular academic expertise have to sit in a room and come to understand the nature of the recruitment process for the research study, and they have to give opinions about the fairness of it all. This is a fundamental part of citizenship in an information-based economy and I am not sure that this important practice is undertaken widely enough. I feel like it is important that I do my work for this CAB that I am in right now, but also in the future, I would like to institute other CABS for other kinds of research projects. In particular, as I get more established with my research in India, I would like to set a precedent of having it reviewed by a CAB in each community where the research happens.