Tuesday, August 12, 2014

WHO Ebola ethics panel excluded those most affected

I'm reproducing here a piece I'm having out over at The Conversation
The World Health Organisation has been in a rush to deal with the Ebola outbreak in West Africa. Last week it declared it an international health emergency, and after two infected US doctors were given an experimental drug, it also convened an “ethics panel” to address the use of unregistered interventions for Ebola disease.
In a subsequent statement, the WHO said drugs unproven in humans could be used on Ebola patients:
In the particular circumstances of this outbreak, and provided certain conditions are met, the panel reached consensus that it is ethical to offer unproven interventions with as yet unknown efficacy and adverse effects, as potential treatment or prevention.
Ethical criteria must guide the provision of such interventions. These include transparency about all aspects of care, informed consent, freedom of choice, confidentiality, respect for the person, preservation of dignity and involvement of the community.
Given that ethics is so central to this discussion and that deploying experimental agents in a population is fraught with difficulty, it’s strange that the ethics panel it put together wasn’t really one at all. Only few of the panelists had any professional background in bioethics or medical ethics. Representatives from the countries affected by Ebola were also missing in action; the WHO added panelists from Japan, Australia, Canada and for good measure Saudi Arabia, but no one from the countries actually affected. Women were also under-represented on the panel.
HIV/AIDS activists fought hard in the early days of the AIDS epidemic to ensure that people affected by the disease are today represented on these kinds of panels. WHO saw it fit to do without. A remarkable turn of events.
Some of those on the panel may have expertise on Ebola, but with a large body of academic literature out there on the two relevant issues, namely ethics of access to experimental drugs in case of catastrophic illness and the ethics of resource allocation, the top names in bioethics and medical ethics that deal pretty much only with these issues, weren’t included on the panel. As Greg Moorlock has argued previously on The Conversation, this happens all too often when big decisions are being made.
It may well be, as some have argued, that getting African panelists at such short notice to Geneva might have been impossible due to visa constraints and similar unfortunate matters. But with some panellists participating virtually via Skype or some other video conferencing tools, it would no doubt have been possible to include some West African representatives from countries affected by Ebola.
The problem with haphazard activism such as that displayed by WHO is that it destroys credibility and trust. There is already a high degree of distrust of foreign aid workers in the countries affected. Talkfests, where others in Switzerland discuss what should or should not happen with access to experimental agents for people in countries of the global south but who are not at the table, is the last thing needed now.
One could counter that the WHO has been responding, however imperfectly, to a health emergency and that it needed to press ahead. But actually at this point in time, there isn’t an experimental agent to be distributed: the company that produced ZMapp, the drug used on the two US health workers (who have since recovered) and a Spanish missionary (who died), has said it is out of stock.
The Nigerian government also recently said that Nigerians wouldn’t be able to access the drug for at least a few months because the drug existed only in such small amounts.
In other words, there was no need for such a rush as far as assembling this panel was concerned.
Experimental agents may be used under certain ethical circumstances, which the WHO knows. And the ethics and regulatory frameworks guiding access in many countries are more sophisticated than the statement of good things the WHO panel produced. Decisions about the how and when should be the responsibility of national jurisdictions and negotiations between nation states. If there wasn’t this exotic thing called Ebola that has triggered a worldwide moral panic, demanding “action”, no doubt we would have been spared this expert statement.
Considering that Ebola constitutes an international public health emergency, other ethical issues such as compulsory confinement of infected people or the professional obligations of medical personnel to patients would have been more appropriate issues for a WHO ethics panel to discuss but weren’t.
I suspect that the WHO wanted to be seen to be doing something. To its credit it put ethics at the forefront of its thinking about the crisis. Alas, it chose the wrong topic at the wrong point in time and arguably, by and large, the wrong people to do so.

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