Responding to emergencies and sharing data

Responding to emergencies is the vital stuff of television and film. Persons are in distress, injured, diseased: there is a natural disaster, an epidemic outbreak, a civil war, a nuclear event. Professionals of all stripes come to their aid, sometimes taking on substantial risks to their own well-being. Both heroic success and tragic failure in this domain rarely fail to generate human interest. Whereas data sharing ... is the sharing of data. It just doesn't generate that kind of excitement. Researchers or research agencies collect data. After they collect it, they may share datasets with others (other research institutions, governments, and so on) in order to spread scientific knowledge, stimulate further research, and perhaps improve the lot of humanity somewhere down the line. What happens when the excitement of emergency response meets the mundaneness of data sharing?

Apparently, Medecins Sans Frontieres (MSF) is what happens.  MSF -- a Nobel prizewinning humanitarian organization -- collects data on the people they are assisting in the many emergencies they are engaged in. Not that this is a bad thing: some of the data collection (on routine medical procedures, adherence to treatments, etc.) are primarily for quality control purposes, and MSF also conducts operational research among groups affected by neglected diseases in impoverished countries. But data collecting in times of crisis leads to an ethical challenge: on the one hand, if the data collected could be used in beneficial ways by other researchers or agencies, it ought to be shared. On the other hand, the kinds of data collected in extreme circumstances (think sexual violence in the Democratic Republic of Congo or injection drug use in Thailand) is sensitive and could harm already vulnerable populations if it is not handled appropriately.

A recent article in PLoS Medicine by the former MSF International President Unni Karunakara describes how the organization developed a policy to resolve these ethical tensions.  Much of it seems sensible and thoughtful, but one point might raise eyebrows. By sensitive data, MSF understands " ... any subset of data that could be misused against the interests of individuals whose data is included in the dataset or against MSF, or put either individuals or MSF at risk for political, financial, or other reasons." Apparently if MSF determines that the risk to its own organization is too high, then it will not share a dataset with others. But what if access to that 'MSF-compromising' dataset might benefit communities? I have pointed out elsewhere that MSF zealously protects its own reputation, sometimes at the expense of faithful disclosure of its own practices. Keeping a positive public relations profile is important for an organization largely dependent on donor contributions. Hopefully the tendency towards self-protection will not have an adverse impact on its data sharing practices.

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.