A group of ethicists will meet on Monday at the World Health Organization to discuss the wisdom or otherwise of making an experimental drug more widely available to those suffering from Ebola.
Ebola is named after a river in the northern part of the Democratic Republic of Congo. Statistically, it is a relatively trivial disease, killing a few thousand people since its discovery in 1976.
Stigma
A common feature of Ebola epidemics is stigma. Sufferers and survivors are often stigmatised by the community, and so too are hospital workers.
In past outbreaks, some survivors were not welcomed back into their community, some were unable to find work, and some were abandoned by their partners. In the Ugandan outbreak of 2000/2001, the possessions and homes of some survivors were burned.
Volunteers trained by the Red Cross visited villages to dispel myths and persuade them to accept the return of survivors. One survivor of the 1995-1997 outbreaks in Gabon described how people would walk backwards away from him, taxis would not stop and, at roadblocks, police would wave him through for fear of touching his identity card.
Hospitals, often ill-prepared to deal with Ebola, have played a role as amplifiers of epidemics in the past. Many victims since 1976 have been healthcare workers. This gave rise to rumours.
In the 1995 Ebola outbreak in Kikwit, Democratic Republic of Congo, the link between the hospital and those dying of Ebola was such that it generated a popular rumour: doctors were murdering workers who had smuggled diamonds out from the nearby mines.
Hostility
In the Ugandan outbreak, locals believed white people sold the body parts of the victims for profit. Western medical staff were viewed with suspicion, and sometimes suspected of bringing in the disease in.
Every major outbreak of Ebola has been met with local resistance and hostility. In January 2002, an international team of experts fled a village in Mekambo, Gabon, when the villagers threatened them with violence. It is not just the locals who are frightened, but the medical staff too.
Medical historians have documented the cultural disdain for local African customs shown by the colonisers of the early 20th century, for example in the response to the sleeping sickness epidemic that afflicted the Belgian Congo. This sometimes led to revolt on the part of villagers, who were forced to take drugs whose efficacy they doubted and who were touched and prodded in unfamiliar ways.
“A well-known saying in ethics is that 'good ethics starts with good facts'”
Funeral practices have also played a role in spreading the disease, but interfering with these has led to discontent. In past epidemics, locals have simply ignored the recommendations not to bury the dead as before, or not to hunt bush meat.
Some communities have relied on more accessible and familiar traditional healers, and these could spread the disease by cutting the skin or performing other invasive procedures. The health infrastructure in some of the countries afflicted by the disease is poor.
Informed consent
It is against this complex historical, cultural and social background that the ethicists this week will need to make a decision. The norms of medical ethics, such as informed consent, may also be different there, and there is a danger in transposing Western norms into different cultures.
