Wednesday, July 30, 2008

Health and Human Rights: new online journal

The journal Health and Human Rights has been around since 1994, and it started out under the editorship of Jonathan Mann. Paul Farmer has took over the reins in 2007, and now it has gone online and open access. The inaugural edition of the journal in this new format has a host of interesting looking articles, but my eye was caught by the piece entitled 'Notes on the rights of a poor woman in a poor country' by Tarek Meguid, Deputy Head of the Department ofObstetrics and Gynecology at Bwaila Hospital and Kamuzu Central Hospital in Lilongwe, Malawi. What is striking about the article is its graphic -- and moving -- description of a vast gap between the human right to health (often in the form of access to basic medical supplies) and what actually happens in health care centers in low-income countries like Malawi. The disjunction between rights and reality can be regarded as a source of inspiration and idealism, in so far as one recognizes the existence of the gap and is committed to narrowing it. But as Dr. Meguid's article illustrates, the commitment and idealism of health care workers in many parts of the world are subject to alarming challenges on every work shift. When the situation on ground is that dire, and the prospects for change seem dim, can the human right to health continue to function as an ideal, rather than a haunting spectre, a biting reminder of failure or source of profound shame?

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Friday, July 25, 2008

Has the IMF helped to spread tuberculosis?

Do health policies do anything? Do they have effects on health outcomes, good and bad? And if they do, is it possible to isolate precisely what effects certain policies have, independent of other, related factors?

These are some of the questions raised by a study recently published in PLoS Medicine, which suggests that International Monetary Fund (IMF) policies are associated with significantly worsened tuberculosis incidence, prevalence, and mortality rates in post-communist Eastern European and former Soviet countries. It has been asserted before that IMF policies, because they often involve reductions in health care spending to control inflation, must have a detrimental effect on health. This seems intuitively plausible. But until now, no serious study has been conducted to test whether the intuition holds water. There are a host of methodological challenges to such studies, as the Editors of PLoS medicine point out. And representatives of the IMF are bound to hammer on such methodological shortcomings in order to question the study results and dodge possible responsibility for harm. But even if this study has limitations, the authors have drawn attention to an interesting research domain -- the health effects of policy decisions -- that ought to be of interest to bioethics workers worldwide.

Saturday, July 19, 2008

Defining 'responsiveness' in global health research

The concept of the '90/10 gap' has become part of popular consciousness, i.e. the idea that only ten 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 -- which even has its own wikipedia entry by now -- was based on old (1990) figures, and the expenditures on diseases affecting the poor have significantly risen in the meantime. There have also been epidemiological transitions among low-income countries, as they have begun to suffer rising rates of cancer, diabetes and heart disease and stroke. 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 whose impact on health may be greater in developed countries than the host countries themselves. And, of course, the moral intuition 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. The idea of responsiveness has found expression in different international ethics documents, including later versions of the Helsinki Declaration, CIOMS' International Ethical Guidelines for Biomedical Research Involving Human Subjects, and UNAIDS documents. Inevitably, the multiple formulations of 'responsiveness' in all these documents, as well as its variant uses among ethicists, has 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? So where is the problem? 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 (or paid lip service to) by those with power in international research.

In the July 5th issue of the Lancet, Alex John London and Jonathan Kimmelman attempt to give a definition of responsiveness that aims to do some work for global justice. According to London and Kimmelman, " . . . [research] protocols 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." Some research -- the authors cite gene transfer studies in Brazil -- going on in low-income countries does not pass the criterion of responsiveness, and at least by this measure, are unethical. There will be inevitably 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' because (for example) a laboratory has been set up or a couple of field workers have been hired to faciliate a project that has, in fact, little to do with urgent health needs of the local population.

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Thursday, July 10, 2008

A well-intentioned amputation?

Dr. Dandyson Allison has gone into hiding, not long after him having amputated the arms of a 13-year old girl. When it is put that starkly, Dr. Allison sounds downright evil. But this is not a fair description of the case. After adding some more relevant details, Dr. Allison comes out looking better. But this does not make his life any easier.

Back in April, in Kaju (Nigeria), Dr. Allison amputated the arms of Saratu Yusuf after she had been hit by a truck, and -- according to Dr. Allison and some witnesses -- her arms were already effectively severed. Had he not intervened rapidly, she might have faced serious medical complications. But the amputation was performed without permission of her parents, and Saratu seems to dispute the claim that her arms could not be viably reconnected. She claims the doctor asked for money up front for medical aid, and that he amputated her arms against her explicit wishes. The Yusuf family is seeking compensation for the fact that Saratu will not be able to work, in the order of almost half a million US dollars -- in a country where the average income is roughly $300 per year.

Dr. Allison's problems do not end there. Refusing to pay the compensation landed him in jail for a week. His clinic has been closed, and his medical instruments seized. Besides being discussed in the press, he is accused by community members of amputing the arms for purposes of 'black magic', the real or imagined stealing of body parts being a familiar theme in sub-Saharan Africa. He has received death threats; a mob threatened to burn down his clinic. The sad picture of Saratu, all-too-reminiscent of child victims of war crimes, is bound to affect public opinion of Dr. Allison.

Dr. Allison claims that his actions were motivated purely by his Hippocratic Oath. If this is so, this is a case of 'no good deed goes unpunished.' The usual story in sub-Saharan Africa is that the notion of patient rights need to be strengthened to counteract potential abuses of medical practitioners (and researchers). And this is largely true. But the case of Dr. Allison suggests that doctors also need some level of protection from families and communities hellbent on retribution.