Guest Opinion by Stuart Rennie
The concept of the "90/10 gap" has become part of popular consciousness, the idea that only 10 per cent of worldwide expenditure on health research and development is devoted to the problems that primarily affect the poorest 90 per cent of the world's population.
This concept was based on 1990 figures, and the expenditures on diseases affecting the poor have significantly risen in the meantime. Nevertheless, though hard numbers are difficult to find, there is a sense that there is still a lot of biomedical research going on in low-income countries where the impact on health may be greater in developed countries than the host countries themselves. And, of course, the moral institution is that this way of conducting research is unjust.
This moral intuition, in turn, gave rise to the idea that health research should be "responsive" to the needs of communities in which the research was conducted.
Inevitably, 'responsiveness' has been expressed in different ethical guidelines, and these multiple formulations have rendered the concept ambiguous. When is a research project responsive, and when not? Since all research projects typically include some benefits for individual participants or communities, aren't all of them responsive in a sense? If the concept of responsiveness stays indeterminate, it has no teeth to criticize actual research projects and hence to help counteract the "90/10 gap."
At worst, it just ends up being another stock phrase in global research ethics circles, bounced around at conferences, and ignored by those with power in international research.
In the July 5 issue of The Lancet, Alex John London and Jonathan Kimmelman attempt a definition: "...(P)rotocols should be defined as responsive to the health needs of the host community only if they are part of a program of inquiry that will expand the capacity of health-related social structures in the host community to meet urgent health needs."
There will be inevitable discussions about whether such-and-such study passes or does not meet the responsiveness definition. But the proposed definition will at least do away with arguments that an international research project is responsive just because a laboratory has been set up or a couple of field workers have been hired to facilitate a project that has, in fact, little to do with urgent health needs of the local population.
Rennie is project manager of a Fogarty bioethics grant. The views expressed here are not necessarily those of the Center, the NIH or the Department of Health and Human Services.