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Interview with Dr. David Carpenter
We spoke with Dr. Carpenter via telephone on March 21, 2003 to get his insights on certain aspects of working with communities. The questions and his paraphrased responses follow. 1. What advice would you give communities as they prepare with working with scientists on a problem? Do not be intimidated by scientists or reluctant to approach them. They are just ordinary people. View them as approachable and have confidence that many will want to work with you. There is a challenge in finding the right one to work with though. You need to find someone who can be a bridge between the academic and ãrealä world. Often this is a more junior researcher rather than someone who is entrenched in the academic profession and perhaps out of touch with people of a community outside this world. Also, pay attention to the lessons learned by other groups and seek out researchers with a good track record already in working with communities. They are out there. 2. How do you communicate results to the individual study participants? The important thing is to be honest and direct. It is important not to frighten the participants ö participants should not think the results mean something worse than they really do. By the same token, one must not sugar coat the results simply to reassure a participant or falsely minimize the characterization of the risk. This is often difficult because the issues are not black and white. The communication will involve explaining that the levels found mean that the study participants are more at risk for some diseases, but it is not certain that they will get those diseases. The study participants are usually quite curious to know how they got those chemicals in their bodies, and I explain that they most likely got them from contaminated food. In the case of the Yuâpik, I also explained that some of the contaminants were probably transported from the lower 48 states. The participants always ask how they can lower their level ö which is not really possible. I also explain how reducing intake of certain kinds of food will probably help. The study participants usually want to know the risk associated with certain types of contaminated foods as well. 3. As a scientist, you have certain objectives in terms of data quality and study design and so forth. Could you describe how you work with a community and negotiate the scope and conduct of a study to make sure that they are getting their questions answered while you are conducting the study in a scientifically rigorous manner? Not only do the researchers have to respect the community, but the community must respect the researcher, and trust the researcher. The communities are, by and large, savvy enough to know that serious investigations of the sort that involve PCB contamination require quite a bit of money. They also know that, if they hope to get sufficient resources to investigate the problem, they will most likely need to partner with an academic institution on a grant application. In order for the grant application to be competitive, the technical components have to be sound. It is my responsibility to attend to these technical details. So, the community must trust me to do this for them. I must design the technical components necessary for a strong grant application, and there has to be commitment to these details in order for the scientific objectives of the project to be met. The big obstacle is that trust has to be established between the community and the researcher in order to enable this mutualism to work. 4. How do you ensure confidentiality for the participants in a study when you are presenting papers on the study results? This is important and quite a challenge. Not only is participant identity kept confidential but also age and occupation of the participants. Some of the precautions taken to protect confidentiality are to establish a unique code for each study participant and keep this correspondence locked up and password-protect the computer file. When logging in results, only the code is used. There are definite procedures that are employed and most researchers take this responsibility very seriously. Sometimes there are glitches in such systems, like a computer file or physical file is left unlocked, but, for the most part, these procedures are adequate to protect confidentiality. Interestingly, often the community views the information collected as belonging to them and they would be curious to learn the identity of particular individuals who showed certain results. This is perhaps natural ö you would see a high value for some compound and you would wonder who it was because you suspect it is someone living near a source of contamination or someone who is in poor health. There has been a need to communicate to the community itself that privacy concerns extend even to the Îownersâ of the data ö the community itself. There was a recent instance that illustrates a worrisome current trend on this issue - in which privacy concerns are being turned on their head, in order to withhold information from scientists. There was a case in which a grant application I submitted was pulled from consideration almost certainly because of the degree to which the study would illuminate neighborhood-specific patterns of disease. Further, there is a tension between the desire to show relationships in the data and protect the privacy of study participants. Sometimes, the sponsoring government agencies will withhold information about rare diseases. If a disease is rare and it is reported, it will be relatively easy to find out where the cases are. There is the fear that this information would be used to target possible local sources, and it appears the government wants to avoid this. So, again, privacy is invoked as a reason to keep this data from qualified scientists. This is a big challenge. Although more and more data are being collected, there is stiffer resistance against releasing this location-specific data. So, it is harder and harder to tell the location of hot spots of diseases or exposure. 5. Many communities have complained about the way they have been mistreated by scientists coming in to study them. Collaboration is difficult and time-consuming so there is tension. Is there an awareness on the part of the funding agencies that these extra costs and community involvement are integral, or is there still a tendency to consider those elements extraneous? There is great diversity among funding agencies on this topic. In general they seem to be changing for the better. A stellar example is the National Institute of Environmental Health Science (NIEHS). This is largely attributable to the leadership of the director, Dr. Kenneth Olden, who happens to be African American. NIEHS is the only agency of its kind that I know about to have an explicit environmental justice funding source ö where grant applications must come directly from the communities. Many if not most other funding entities pay lip service at best to community involvement or environmental justice concerns, although there is some increased push in this direction overall. Why is this? It is very important who is in charge. The directions really do come from above about what sorts of projects get funded and what the tone of the agency will be. The authority determines the direction of the funding agency. There is still a bit of academic arrogance involved as well. There are cases in which someone without a Ph.D. will put in for grant funding, and the members of the review panel will condescend to the applicant and claim that he or she is not capable of running the project. A lot of that is just a sort of academic condescension that comes with the territory when you are dealing with competitive people with advanced degrees who think they are superior to those with lesser academic credentials. What appears to be necessary is a generational change. Many of the people who hold such attitudes are older scientists who eventually will retire from positions of authority and, hopefully, make way for more open-minded sorts. In addition, there is still a bit of hostility to the idea of community involvement or leadership of projects for a variety of political reasons. But, there is increasing recognition of its essential importance in studying environmental health and effects on a community. 6. What advice would you give other scientists in working with communities? I urge scientists to look at the Mohawk project as a strong model and take to heart the three pillars of conduct observed there: Mutual Respect: This means that, as a scientist, you cannot look down on community members as uneducated just because they do not have an advanced degree. It is important for scientists to understand that the community members they serve are intelligent and valuable individuals, equal to the researcher. The community, in turn, must trust and respect the scientist to do the job well. Equity: This essentially equates to sharing of resources of the grant. This often comes in the form of employment and participation for members of the community. It should not be looked at merely as doling out jobs, but should be viewed as gaining from the experience and local knowledge of community members. Empowerment: The goal for the project should be to give the community the tools and know-how to deal with their own problems in the future. None of the above is possible without good communication. If you cannot establish communication and through that, trust, there is very little hope of being successful. This communication is often a problem for many academics. Many people in academia come from relatively privileged backgrounds and have little experience in communicating with people outside that world. Actually, they have a lack of experience and discomfort with this process. I grew up on a farm in Minnesota and this background helps me tremendously in dealing with people outside academic institutions because I can relate to them and their experience. David
Carpenter |
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Coming Clean ð PO Box 8743 ð Missoula, MT 59807 ð info@come-clean.org |
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Dr.
David Carpenter is a neurotoxicologist and professor in the
Department of Environmental Health and Toxicology in the School
of Public Health at State University of New York, Albany. He
has worked successfully with many communities across the country
to help them assess the degree of human exposure to a range
of contaminants, including vast experience with PCBs (polychlorinated
biphenyls). He has been directly involved with two projects
included in this handbook: the investigation of PCB contamination
among the Akwesasne Mohawk community in upstate New York on
the St. Lawrence River, and the Yuâpik community on St. Lawrence
Island off the west coast of Alaska.