What a plague shows: Ebola and the limits of ethics
Criticism of authorities for giving priority to aid workers to receive a highly experimental treatment needs to be put into context, writes Lauri Zoloth.
A plague is a formidable enemy, and is armed with terrors that every man is not sufficiently fortified to resist or prepared to stand the shock against. - Daniel Defoe, A Journal of the Plague Year 1722
Ebola, a word that embodies our modern terror of plague, has roared back into news headlines. Though no-one is entirely sure where it came from it most likely emerged from the African jungle, evoking primal Western fears of the “Dark Continent”. It kills its victims in grotesque physical collapse — blood and faeces, vomit and pain. It has no cure and even modern hospitals can do little but support its victims. This time the disease has travelled from central Africa to the coast, thousands of kilometres from its origins.
Ebola is a terrifying actor but its macabre performance is made far, far worse because it has broken out in post-war chaos where barely adequate clinics lack basic supplies of bleach, clean water and soap, where public health education has limited reach and where tribal leaders often distrust medical intervention in the best of times. To make matters worse, Nigerian doctors have threatened to strike rather than care for the Ebola patients. Everything that is wrong about African health care systems and the enormity of the gap between the rich and the abject poor is starkly revealed.
This sort of background presents ethical issues aplenty, but there is a further ethical question the crisis raises that is more immediate. This is about experimentation on humans in the heat of an epidemic and how to decide who should receive a scant supply of what might or might not be a treatment. These questions were raised when it was first reported that the drug ZMapp, an antibody-based experimental treatment for Ebola, had been reserved for some of the apparently most privileged people to get the disease – two white Americans and a Spanish priest – while hundreds of poor black Africans died. At this point the results of the treatment are unclear – the two Americans are improving and the priest died – but what are the ethics of this?
First, when we bioethicists think about human research we always do so under the spectre of past abuses. We’ve studied history’s lessons about the moral corruption of medical researchers, for instance from the trials of Nazi doctors at Nuremberg and scandals in the United States – notably the Tuskegee syphilis experiment in which infected black men were left untreated in order to study the “natural history” of the disease. In the wake of these cases binding ethical codes were developed to regulate experiments on human subjects.
Should it make a difference if the members of the apparently
favoured class are aid workers?
One of the most important rules is to be certain that it is not only the poor and vulnerable who are selected to test new treatments. Critics of big pharmaceutical companies often claim that it is these groups that are exploited to test drugs for the wealthy and privileged, yet here in the current Ebola crisis we have the reverse. The wealthy (by African standards) and privileged were the guinea pigs for a drug that, if approved, will be largely used for the world’s poorest.
In large part the outrage shows how confused people are about the so-called “compassionate use” of experimental drugs. They assume the cure will work. Yet the only thing we know is that it did not kill the victims immediately. Is giving dying people a last ditch hope worth it? The World Health Organization (WHO) committee, which includes three bioethicists, a patient advocate and several public health physicians, decided it is. However, it has stipulated: “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.”
But let us return to the question of reserving the drug for the “privileged”. Should it make a difference if the members of the apparently favoured class are aid workers? These dedicated women and men often move their families to serve in places stricken by terrible suffering. And indeed, the two Americans who received MZapp are aid workers, one a doctor. What is more, they were not the first to be offered the drug.
It was first offered to an African, Dr Shiek Umar Khan, widely acknowledged as the leader of the fight against Ebola and a national hero. His colleagues, worried because the drug had never been tested in humans, turned the treatment down. It was only after Khan died that it was offered to others on the front lines of the epidemic – people who could fully understand the serious nature of the risk they were taking.
The aid workers were infected because they stayed despite inadequate conditions and overwhelming chaos. Ethically we have a duty to respond to such courage, so it is understandable that the people who supported them — from a charity called Samaritan’s Purse — pulled every string to save them. Nor was that the only Western response. Despite the risk more foreign doctors and nurses headed to the epidemic zones, the drug company only had six doses of ZMapp and sent the last of its remaining supplies of the trial drug to Liberia, and WHO is mounting a full response to the epidemic.
We should also remember, at a time when there is deep suspicion about genetically modified organisms, that ZMapp is produced using genetically-modified tobacco plants. And yet we turn to it eagerly.
Finally, we should also note that WHO did raise the ethical questions and debate them publically, even inviting a non-expert public member to the table.
Plague is as old as the human record. This time it is not a movie or a novel. Ebola has revealed much that we usually choose to ignore – how many of the desperately poor are trapped in a daily struggle for survival.
Ebola may have captured our attention, with the death toll since its outbreak last December now over 1,000. But look at what else is killing people in Africa. Every four months in Sierra Leone there are around 650 deaths from meningitis, 670 from tuberculosis, 790 from HIV/AIDS, 845 from diarrheal diseases, and more than 3,000 from malaria. Long after this epidemic burns out, these daily epidemics will still need the our attention, and we should not turn away, for it is these issues of justice that are the real ethical challenge.