Friday, July 31, 2009

Ethics, research and Medecins sans Frontieres

Medecins sans Frontieres (MSF) is a humanitarian organization whose Nobel Prize winning work barely needs an introduction. They are well-known for their efforts in providing health care (among other services) to those in severe social crises and emergencies worldwide. What is less known is that MSF is increasingly conducting its own research among vulnerable communities where it does its humanitarian work. This week, PLoS Medicine published an editorial and an article about the ethical challenges faced by research conducted by humanitarian organizations and the establishment of a research ethics committee within MSF.
It makes for fascinating reading. The ethical challenges abound: what does community engagement -- a recent 'must' for ethical research -- come to when the 'community' is being unraveled by war or a natural disaster? How can consent of participants be voluntary if MSF is doing clinical research and acting as the sole provider of medical care in a certain locale? How can consent be informed when there is a blurring of lines between MSF care and MSF research? How can MSF adhere to the ethical requirement of providing research benefits to local communities, when its field sites are subject to being moved elsewhere, due to severe political unrest or larger organizational priorities? The article is invaluable in carving out a relatively new area of study, i.e. 'humanitarian crisis research ethics.'

At the same time, though, some sentences in the article left me with the impression that the marriage between MSF and its ethics committee has been unhappy at times. The paper states that the ethical review board is "not accountable for any research which is carried out against its advice," suggesting that there were cases of non-approved research. It also states that " ... not all research is submitted to the IRB for review", giving the impression that MSF researchers or other MSF staff (rather than the ethics board) have been empowered with the decision of what constitutes reviewable research. At other points, the authors (themselves members of MSF's ethics review board) indicate that their recommendations have only partly been taken into consideration in MSF's research policies or procedures. A bit strange, when you think about it: wouldn't you expect a humanitarian organization, having decided to do research on vulnerable populations, to be the most aggressively concerned about the protection of research participants?

Postscriptum: since I am still in the Democratic Republic of Congo, my eye alighted on the video posted on MSF's homepage. It is a depressing piece, but gives an impression of the situation in the east of this country, and the activities of MSF there.

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Saturday, July 11, 2009

Rwandan mandatory sterilization kerfuffel

The impact of the internet on the processes of determining health policy, anywhere in the world, is worth studying in its own right. Case in point: last week, Human Rights Watch (HRW) came out with a press report condemning a draft human reproductive rights law proposed to the Rwandan parlement. The draft, HRW alleged, contained a provision stating that individuals with intellectual disabilities were not to be allowed to reproduce. The Rwandan draft bill contained a whole lot of controversial material besides, especially pertaining to HIV/AIDS: compulsory premaritial HIV testing; requirement of a married individual to be tested for HIV if their spouse requests it; permission of doctors to test children or incapacitated persons for HIV without consent and then disclose the result to parents, guardians or other care providers. But it was the forced sterilization that really hit the internet, here and here and here.

Rwandan government officials scrambled to do what politicians (first) do when faced with a public relations nightmare: deny everything. Damascene Ntawukuriryayo, deputy speaker of the Rwandan parliament, denied the claims of HRW, said that there was never a proposal for forced sterilization, and that plans for HIV testing before couples get married were always to be strictly voluntary, not compulsory. Apparently thinking that a good offense is the best defence, Mr Ntawukuriryayo stated that HRW should check its facts before releasing reports into the wilds of the internet.

It does not take much effort to find views that contradict Mr. Ntawukuriryayo's statements. Back on June 23rd, before the HRW report hit the web, Focus Media in Kigali published a fairly detailed article by Sam Ruburika on the shortcomings of the draft legislation, including quotations of the original text. The proposed legislation on forced sterilization appears as Article 22: "The Government shall have the obligation to suspend fertility for mentally handicapped people as long as the handicap is still persistent and upon decision by a medical team comprising at least three medical doctors. An order of the Minister in charge of health shall specify the list and implementation modalities for diseases accounted for by this article." According to Ruburika, the Chamber of Deputies approved of the draft legislation, including its articles on sterilization and compulsory HIV testing, and it was only when it reached the level of the Senate that red flags started flying.

How are we to understand this? It goes without say that pregnancy and sexual relationships involving mentally handicapped persons is a very difficult and important issue. Why the hamfisted approach? One possibility is that there are members of the Rwandan government whose views on reproductive policy, while they might express certain draconian community sentiments, are at odds with the Rwandan constitution. Fortunately there are checks and balances enough to stop these sorts of unreconstructed proposals from becoming law, but it is striking that the draft survived in that form as long as it did. It survived long enough to be detected by the internet radar -- spelling its immediate demise.

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Sunday, July 05, 2009

This blog has moved to Cape Town

From the beginning, this blog has explored emerging bioethics, research ethics and public health ethics issues in developing world contexts. But much of it has been, unapologically, about sub-Saharan Africa. Unapologically, because these fields have been -- and continue to be -- disproportionately orientated towards what goes on in more affluent, industrialized nations of the north.

Within this sub-Saharan focus, South Africa has had a prominent place in this blog. There are probably many sources for this. South Africa is a comparatively better-off country than (some of) its sub-Saharan counterparts, and therefore there is greater exposure of bioethical issues in the press and on the web. HIV/AIDS always brings with it dilemmas for researchers, clinicians and public health policymakers, and South Africa has a devastating HIV?AIDS epidemic, coupled with standard-fare tuberculosis, multidrug-resistant tuberculosis, and as if that was not enough, extremely drug resistant tuberculosis. The country has also had a spectacularly strange Minister of Health, some of whose pronouncements and policies about HIV/AIDS could have been written by Monty Python, but of course the unfunny part was that she really meant it. And an ex-President who denied HIV causes AIDS, and a bevy of medical charlatans running about. Plus conflicts between modern medicine and traditional healers, rising up (for example) in cases where young men die by the dozen in blotched ritual circumcisions. The country also has -- a legacy from the Apartheid era, no doubt -- a strong research infrastructure capable of conducting clinical trials and therefore dredging up all the research ethics issues of doing such trials with vulnerable populations. In short, a little bit of everything.

I accepted a sort of one-year visiting professor position in Cape Town awhile ago, and arrived here last week. It is not the first time I've been in the Cape: I completed my philosophy Ph.D. while living in nearby Stellenbosch some years ago, and left the country in 2001. Some things have changed, much has stayed the same. It remains to be seen whether this blog changes, now that it is being written out of Africa.

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