Friday, August 22, 2014

Susceptible to Ebola, immune to criticism

Karl Marx famously wrote that "... philosophers have only interpreted the world, in various ways. The point, however, is to change it." The quote by Marx is sometimes used to bash 'academics' in the name of world-changers, men (and women) of enterprise, the 'hands-on' types, interveners, implementers, and so on: what we need is action, not thinking! This, of course, this turns Marx into a cartoon. If he knew the shortcomings of thought without action, Marx also recognised the perils of action without thought. Marx was a German philosopher. He thought for a living. But that hasn't stopped lesser minds from treating action as if it were a good in itself, something we should not distract with reflection or critique. Just do it.

I read today an opinion piece in US Today that brought the above thoughts to mind. In it, Franklin Graham, the head of the evangelical/relief organisation Samaritan Purse, claims that there is no ethical issue involved in providing Dr. Kent Brantly (employee of Samaritan Purse) privileged access to a experimental drug for his Ebola infection. Those who think there are ethics to debate here are merely intellectual elites ('academics' , 'talking heads' ) far removed from 'primitive deathbeds' in Africa, and the ethical debate -- politically correct analysis from the cozy confines of America -- does nothing to help save people at death's door. Dr. Brantly, the piece goes on, left the comforts of America to provide medical assistance in Liberia, got infected with Ebola in the process, and what happens when he gets access to the scarce experimental treatment? People debate about whether that is ethical or not. This is outrageous, because:

this drug is being used to save a doctor who will say thank you by returning to some of the darkest, dirtiest, loneliest places on earth to bring hope and healing to others. What is the ethical dilemma in that equation?

It is hard to know where to start. I suppose the first point to consider would be the neo-colonial, 'Heart of Darkness' description of someone else's country as the 'darkest, dirtiest, and loneliest places on earth.' Apparently the dark, dirty and lonely people should simply be grateful for whatever help they manage to get, and if American academics say anything, they should be singing the praises of the organisation's humanitarian actions. Therein lies another assumption: if you save the lives of individuals, or if your organisation has the mission to save the lives of individuals, then any critical perspective on you or your organisation is inappropriate. Medical humanitarian organisations sometimes take this defensive stand, despite empirical studies that have shown that they are (predictably) a complicated source of good and bad, rife with ethical challenges, like any other sort of human institution. And as for the assumption is that only faraway American academics have the luxury to raise ethical concerns about giving privileged access to experimental treatment to an American doctor and missionary, i.e. people unfamiliar with and untouched by African realities ... think again. The ethical questions around this issue are being debated within Africa, by Africans, as well. Africans also think about issues of global inequality and injustice when they see socio-political elites being whisked off to superior health care, not just when Westerners get sick and get evacuated to the better hospitals in the brighter/cleaner/happier countries, but also when their own political leaders get sick and are flown up to fancy clinics in Paris or London. It is not politically correct analysis, it is painful reality.

The story about the Americans gaining access to the experimental Ebola treatment does reveal something about the state of the world, including its ethics. Debating the ethics is not inappropriate, nor does it hinder efforts to control Ebola. To see this though, you have to move beyond the missionary position.

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Thursday, August 07, 2014

Ebola ethics

Interesting to see the kinds of attention that has been given to the most recent Ebola outbreak in Africa. Part of the reason is that it is a serious epidemic, causing nearly a thousand deaths so far, and it is occurring in West Africa, rather than its usual stomping ground of the Democratic Republic of Congo and thereabouts. Another reason is that some Americans overseas have been infected, and medically evacuated back home, so the story involves not only the familiar 'death exoticism' of faraway anonymous Africans, but has a US domestic component as well.

Perhaps because it involves American citizens, bioethicists have been more active in commenting on the ethics of Ebola control than they were during outbreaks of times past. Two of the infected Americans have been treated with an experimental Ebola drug, the access to treatment being aided and abetted by the National Institutes of Health and the Centers for Disease Control no less. Bioethicists, chronic worriers that we apparently are, worry about this development. If the drug has not been FDA approved, how do we know that it is safe and effective? Even if the conditions of the American patients improve, how do we know whether the drug itself is responsible, if no rigorous clinical trial has been conducted? Why would people continue to join clinical studies if they could gain access to experimental drugs outside the FDA's vetting system?

All fine and good, as worries go. But I wonder what would happen if the Ebola outbreak happened in Louisiana rather than Liberia. Would the American public and leadership -- including its bioethicists -- be so sanguine about waiting years for the results of clinical trials before trying some promising-looking drugs out? Faced with an infectious disease with a very high mortality rate, would we revisit and loosen the rules or hold firmly to the tenets of evidence-based medicine? Is the latter what happened, say, early on during the US HIV epidemic? Or is the ethics a bit different when it is largely somebody else's deadly epidemic? For its part, the World Health Organisation seems more open to the use of not fully tested treatments, for Africans, given that the current alternative for most of those affected is (as the Director of the Wellcome Trust put it) a tepid sponge bath and the promise of a nice burial.

UPDATE: The Scientist issued a short piece on the subject of Ebola and ethics last night, and USA Today has a piece up, with reader comments.

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