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Exploitation or salvation?
Arguing about HIV research in Africa
The results of a study on heterosexual transmission of HIV were recently reported in the New England Journal of Medicine, raising yet another uproar over the ethics of international research. The study followed couples in which only one partner was infected, and where no preventative or protective measures were used. This allowed researchers to accurately measure the risk of exposure to the AIDS virus. HIV infected individuals were not offered what has become standard medical care in the developed world to treat HIV infection, and uninfected partners were not informed that their partner was HIV infected. The research was conducted in Uganda, where HIV treatment programs are very limited and the rate of HIV infection is high. Carrying out research in such settings raises fundamental questions about acceptable levels of risks to research subjects. Does research targeted at less developed countries offer them important benefits, or does it exploit the unfortunate circumstances of their citizens? Or, does it do both?
Your risks may be my benefits
In all research, individual subjects are put in harm's way for benefits that will probably go to somebody else. That is part of how research is conducted, and it's justified by relying on the concept of informed consent from research subjects and a requirement that the distribution of the risks and benefits of research are appropriate.
What does appropriate distribution mean? Usually it requires that the benefits of research go to the subjects themselves, or at least to the group from which they come. Real concerns arise when research is done on one group for the benefit of another -- for instance if research performed in Uganda was used to develop better HIV prevention techniques that were then only used in the United States. This sort of splitting apart of risks and benefits becomes ethically suspect as it moves toward all the risk going to one group and all the benefits to another.
So when research is performed internationally, it is important that the local population from which subjects are drawn have at least the potential to benefit from the research.
Taking advantage of unmet needs
There are two main reasons AIDS research is done in developing countries. First, there is a crying need for ways to stem the rising tide of HIV infection in countries such as Uganda. And second, the largely untreated populations in developing countries means that important information about disease can be gained in ways that wouldn't be possible in countries with well-developed health care systems. This is what makes studies such as the one in Uganda ethically troubling. While seeking to provide benefit to future Ugandans and potentially many others, the research takes advantage of the fact that neither health care nor HIV prevention is available to large parts of the population.
This doesn't mean that the only efforts should be to increase the standard of health care in developing countries, but neither should we create incentives to continue the status quo so that research can be conducted more easily.
Does one standard fit all?
One way to avoid this sort of research imperialism is the suggestion that there be a single worldwide standard for acceptable research. Some scholars have argued that this should mean that the minimum level of care in a study must be the best currently available anywhere in the world. But such arguments seem blind to reality -- the standard of medical care in Uganda is different than in the United States, and to require research to compare new approaches to American quality of care misses the point for people in much of the developing world.
So is international AIDS research taking advantage of the unfortunate circumstances in less developed countries, or is it research whose findings will help their future citizens lead healthier lives? In many cases both may be true, and the key is to be able to distinguish research that is mostly exploitation from research that is mostly beneficial. Otherwise we risk further isolating those who most need access to the benefits of research, and turning protection into injustice.
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.
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