For this first issue of the on-line version of the anthropology matters journal, I asked one of my informants to write a few words about what it is like to be an object of study. Her name is Jackie Nabwire and she lives in Kampala, Uganda, where she works as a counsellor for Nacwola (The National Community of Women Living with HIV/AIDS). Jackie herself has been living with the HIV virus for over 8 years, and has found that she and the people she counsels serve as a continual source of academic curiosity.
Medics, documentary-makers and social scientists have all visited Nacwola, and requests are constantly being made to carry out one form of research or another. To this list we now need to add ‘anthropology’ as my own research concerns how the experience of living with HIV/AIDS affects people’s perceptions of time, existence and ‘otherness’. For over a year I visited people two or three times a week in their homes and at NACWOLA. Accordingly I came to see people during periods of health and sickness, during times of happiness and great distress, and perhaps inevitably a certain level of intensity developed within these relationships.
In the following article, Jackie concentrates on biomedical research. She raises a number of issues that we as anthropologists can learn from and incorporate into our interactions both during and after we leave the field. The researchers in question no doubt thought they had made their motives and purpose clear, and most were no doubt certain in their own minds about their ethical responsibilities and presumably had a clear sense of how long their obligations would last. What follows is an invitation to re-investigate our own anthropological practices in relation to those we study. It invites us to think again about the conditions under which we elicit information, the way we impose temporal boundaries upon our fieldwork relationships through the PhD structure, and asks us to consider the consequences of our absence as well as presence in the field.
If you talk to anyone about research in human medicine they will tell you it involves lots of highly sophisticated technology and researchers taking lots of samples, re-samples and making comparisons over an extended period of time. But what we also need to remember is that research is done on vulnerable human beings, that research can make things difficult, and that frequently things become even more complicated because the researchers themselves are often not really sure what might happen during the trial.
Take, for instance, research in the field of HIV/AIDS. One time when I joined an HIV/AIDS study, the researcher introduced me to another doctor also doing research on the HIV virus. Looking back I still cannot explain what the study was about or what eventually came out of it. At the time I somehow thought I was being given a drug to combat the virus. I don’t know how I came to think so, but it must have been the lack of information that made me choose to think what I wanted. I went through two years of this study, swallowing tablets and liquids, blood test after blood test, pricks after pricks. I even went through the trauma of knowing that I am HIV positive every single week of those two years that I was part of the study. Sadly I still re-live those moments.
During the two years we were never updated about what was or could be happening to our bodies. We were not given any information or even helped to interpret the results of those blood samples they were always taking. If you ask me now, I would say we were simply a bunch of desperate HIV virus-carrying people in need of a cure and that nothing much mattered at that time. We didn’t even know who was funding the project or what they were going to do with the information gained from our experiences. And then there was the other time when we were endlessly photographed in every corner, had to fill out the questionnaires and then had to answer even more questions. Some of these questions are depriving you of privacy and making you feel so exposed. And afterwards they vanish and afterward you are left alone never to hear from them at all. It is even more humiliating when the same questions are asked of your children. Some of them break down and cry as it is pounded into their brain that their parents are going to die. The reason the children break down is not because they don’t want to hear about their parents being HIV positive, but because the person asking has no humour and just continues talking like what they are mentioning is not real to anyone. Yet to those concerned it is very real and needs to be treated with tenderness.
Research projects on people living with HIV/AIDS are important and it is only through such research projects that we can hope for a break through in this epidemic. But if only those researchers would care to explain the purpose of the study, the likely outcomes, and especially the effects on the lives of those who are the subject of the research. Surely those being studied are entitled to know what is the intention of the study and what can happen to them as individuals as a result of the study. It would also only be fair after the end of it all, if those people who participated in the study were called back and briefed about what happened and were told what had been learnt from what they went through and participated in.
Being studied made me feel like I was playing a vital part in the study. What I didn’t like was the secrecy that surrounded the whole process. I could feel it every time I tried to ask my doctor about some of the things I supposed I might need to know. The vague responses…the rejected questions…the dismissed questions…it was like the researchers were doing me a favour by my being turned into a guinea pig. And for those conducting the questionnaires, or filming a documentary and sometimes asking those aggressive questions, I can only say that at times I resented it so much.
However, as I came to find out later, I was not alone. When I talked to my colleagues who have also been on such studies, we all felt that they were not involving us as fully as we expected them to. I mean making us feel as if it is our responsibility, as people living with HIV, to see to it that we get to the reasonable end after all of this. My colleagues with HIV keep asking what they get out of participating in the HIV research studies. They feel they should be paid some compensation since they don’t even know why the studies are taking place apart from guessing that it might lead to some good. Some people have participated in several studies but have never even come close to knowing the results of the study, and are asking themselves what is the meaning of this research. They are even sceptical about joining them any more. If those carrying out the research studies claim they are conducting a trial for an HIV drug or some other research to improve on the lives of people living with HIV/AIDS, then they should at least let us know why it was that they were unable to come up with the cure drug or a better solution to the life pattern. We should be informed why the drug hasn’t worked. We can’t expect miracles but these are questions that can be answered.
When one is told everything about a proposed research study, it enables the one joining to make an informed decision. It would also put a stop to the misconceptions, the unfulfilled hopes and the imaginary expectations. Sometimes it is left to the level of understanding that is already there among those participating in the study, to try and work out and perceive the aims of the study. This is made worse when there is not enough information. In my experience, people often join studies because a friend or acquaintance has shared some information and told them about the study. This is when misinformation can be spread on that particular study. First of all they probably do not know the real purpose of the study. One person I know abandoned her TB treatment to join a TB prevention study simply because there were fewer tablets to swallow. She seems not to have told the researchers that she was already receiving treatment and already on TB medication. This meant that when she underwent the X-rays and other TB related tests they did not detect active TB viruses. She was then started on the research programme but because she was not completely cured of the TB infection she soon became ill with the infection again. Consequently she had to be re-started on TB treatment afresh with the result that she might take longer to heal because of the more stubborn virus that might have been created in her body. I feel this was due to lack of enough information on the study before she joined which prevented her making an informed decision.
Most research studies that are carried out here in Uganda include some small financial incentives like transport refunds and meals. Due to low income some people join solely to access these incentives. Without a proper explanation to such people defection is more likely to occur affecting the study. Proper information would reduce the lies people tell just to participate in the studies to gain access to the incentives. For example some people do not take their tablets as they are supposed to which gives false results, or people may give wrong testimonies to fit in with the criteria. Explaining everything more properly would decrease such incidences.
So to conclude this little story; HIV/AIDS studies are very important and it is a sad fact that they also have to be done on people to find out their success. Researchers need to realise that those people participating are important as well, although I need not stress their importance any further as it is obvious. What I do want to emphasise is that if a person is to join such a study then they need to be well informed of the purpose – what is expected, what might happen, how far they’ve gone with that particular study, past findings – and a promise to be updated on what will finally come out. The researchers should also be willing to explain and talk about whatever might come up during the course of the study. This would demystify the imagined outcomes, the feelings of exploitation and feelings of being left in the dark. It would also encourage and energise the people being studied and decrease the defection due to change of heart, the uncertainty, and the many lies that are told.
Jackie Nabwire lives in Kampala, Uganda, where she works as a counsellor for Nacwola (The National Community of Women Living with HIV/AIDS).
Andrew Irving is currently completing his PhD at the School of Oriental and African Studies, University of London