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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