Ebola, Paternalism, and the Need for WHO’s Medical Ethics Review of Experimental Treatments

The World Health Organization has released a statement (in full, bottom of blog post) that they are going to convene, early next week, a panel of medical ethicists to “explore the use of experimental treatment in the ongoing Ebola outbreak in West Africa.” The statement goes on to say that

[t]he recent treatment of two health workers from Samaritan’s Purse with experimental medicine has raised questions about whether medicine that has never been tested and shown to be safe in people should be used in the outbreak.

It’s probably safe to assume that at least some of this statement was informed by the Wall Street Journal op-ed published by Jeremy Farrar, David Heymann, and Peter Piot.As I said on Twitter last night, when Peter Piot talks about Ebola, I stop and listen. In particular, the authors note that it “is highly likely that if Ebola were now spreading in Western countries, public-health authorities would give at-risk patients access to experimental drugs or vaccines” and that the “African countries where the current outbreaks of Ebola are occurring should have the same opportunity.” Farrar, Heymann, and Piot also noted that ideally, the World Health Organization would assist the involved African countries with protocols for experimental treatment, research, and prevention, while simultaneously assisting with traditional treatment and containment measures.

This, surprisingly, turned out to be a somewhat controversial view, at least on Twitter. But the West is pretty enamored with the Western Cowboy Doctor who swoops in and saves the day, and there is an enmeshed culture of paternalism and rescue when it comes to how America views, or even talks about, the countries of Africa. It’s one of the reasons any effort to combat pandemics needs to be interdisciplinary; the heroic myths of one field can easily end up being the illustrative horror stories in another. In particular, the West has not been kind to African countries during outbreaks, previous Ebola outbreaks included.“First the French and then the Americans came up the river. Each time they took four tubes of blood, even from sick children. They never returned, and we never received the results of the tests.” Local people of Mékouka and Makokou, Gabon, discussing the rivalries between American and French researchers during the 1996 Gabon outbreak of Ebola. Taken from the Hewlett’s book Ebola, Culture, and Politics: The Anthropology of an Emerging Disease. As anthropologists Barry S. Hewlett and Bonnie L. Hewlett note in their book on Ebola, culture, and politics, there is a tendency for outbreaks to only be contextualized through Western biomedical knowledge and technology. While that might have worked when outbreaks were merely local, as everyone and their grandfather has taken to pointing out, we live in a global environment, with global travel. As such, our approach to outbreaks needs to be global, not local.

There is a long and exploitive history of white intrusion into African countries, and that said history has created a culture of mistrust shouldn’t be surprising. And I’m not just talking about colonialism; pharmaceutical companies have used African countries as testing grounds for “clinical trials” that would never get off the ground in America or other developed world countries. (This was helped by the 2008 decision by the FDA to drop the requirementThe Food and Drug Administration should rethink its rejection of the Declaration of Helsinki. Nature 453, 427-428 (22 May 2008) | doi:10.1038/453427b; Published online 21 May 2008. that international clinical trials follow the requirements of the Declaration of Helsinki.Instead of providing the best standard medical care to control groups, placebos can be utilized. Smashing.) Meningitis cure testing in Nigeria, AZT trials and contraception testing in Zimbabwe;Read Harriet A. Washington’s book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present for more. we’re not talking the distant past, but the past 35 years.

This is why I’m glad to see that WHO has taken Farrar, Heymann and Piot seriously, and, in a step further, that they’re going consult actual ethicists on the ethics of providing experimental, untested treatment to a vulnerable population in need, rather than just allow the status quo to continue. There’s no news yet on just who will be participating in this convention of ethical experts, but here’s hoping WHO has learned from their past mistakes and will be including a diverse range of voices with experience in the research mentioned above, the history of mistrust, culture, and of course ethics. While I’d hope it goes without saying that medical ethical representatives from the affected African countries should be present, past experience has taught me it’s best not to assume people will automatically reach for diversity over expertise. Again, here’s hoping; after all, I’d really hate to have to reach for awful WHO’s on first style jokes next week to highlight poor panel selections.

 

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WHO to convene ethical review of experimental treatment for Ebola

WHO statement
6 August 2014

Early next week, the World Health Organization (WHO) will convene a panel of medical ethicists to explore the use of experimental treatment in the ongoing Ebola outbreak in West Africa. Currently there is no registered medicine or vaccine against the virus, but there are several experimental options under development.

The recent treatment of two health workers from Samaritan’s Purse with experimental medicine has raised questions about whether medicine that has never been tested and shown to be safe in people should be used in the outbreak and, given the extremely limited amount of medicine available, if it is used, who should receive it.

“We are in an unusual situation in this outbreak. We have a disease with a high fatality rate without any proven treatment or vaccine,” says Dr Marie-Paule Kieny, Assistant Director-General at the World Health Organization. “We need to ask the medical ethicists to give us guidance on what the responsible thing to do is.”

The gold standard for assessing new medicine involves a series of trials in humans, starting small to make sure the medicine is safe to use. Then, the studies are expanded to more people to see how effective it is, and how best to use it.

The guiding principal with use of any new medicine is ‘do no harm’. Safety is always the main concern.

Media contact:
Tarik Jasarevic
WHO Department of Communications
Telephone: +41 22 791 50 99
Mobile: +41 79 367 62 14
E-mail: jasarevict@who.int