Resolving the ethics of the Ebola dilemma

 
A Liberian nurse (C) addresses family members of dead Ebola victims before burial on the outskirts of Monrovia (6 August 2014) Nurses in Liberia have been briefing the public about the risks

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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.

In contrast, malaria and tuberculosis each kill several million people each year. Measles killed 122,000 in 2012. Yet, Ebola has captured the public imagination. We do not know which animal harbours the virus although bats have long been suspected, and this makes prevention and control difficult.

The clinical manifestation is dramatic, with rapid progression from infection to cell death and symptoms that can include bleeding, vomiting and diarrhoea. The fatality rate is high, ranging from 50% to 90%.

Stigma

A common feature of Ebola epidemics is stigma. Sufferers and survivors are often stigmatised by the community, and so too are hospital workers.

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Western medical staff were viewed with suspicion, and sometimes suspected of bringing the disease”

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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.

The natural host for the virus is the fruit bat Bats may harbour the virus

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.

Staff treating Ebola patients at a hospital in Liberia The current Ebola outbreak is the biggest yet seen

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.

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A well-known saying in ethics is that 'good ethics starts with good facts'”

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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.

A map showing Ebola outbreaks since 1976

A well-known saying in ethics is that "good ethics starts with good facts". Ideally, sitting around that table will be medical historians, anthropologists, clinicians, epidemiologists, logisticians and other specialists. Only then can a nuanced appreciation of the likely risks and benefits be determined.

This will include anticipating what might happen if the drug is introduced and proves ineffective or even harmful, how the media and the local community will react and the consequences of this reaction for victims, healthcare workers, and others, and how the selection process for candidate drugs should take place. Without this input from other disciplines and an understanding of the situation "on the ground", the views of the ethicists may be of limited practical value.

Dr Daniel Sokol, PhD, is a medical ethicist and barrister at 12 King's Bench Walk Chambers, London.

 

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  • rate this
    -2

    Comment number 128.

    I had led to believe that this Ebola outbreak was due to the consumption of bush meat, as was the Aids virus, Maybe educating the locals not to eat bush meat would be the first step in eradicating these viruses.

  • rate this
    -2

    Comment number 127.

    117.tellitasitis

    Let them take whatever they wish to but let's not get the British taxpayer to foot the bill!

    --

    Until it hits here & then wouldn't people be glad that guinea pigs had already tried & tested the drugs.

  • rate this
    +1

    Comment number 126.

    I'm offered a choice:

    No drug and there is a 50% chance you will die.

    Have the drug and there is a 90% chance the drug will cure you but a 10% chance it will kill you.

    It doesn't take an actuary to work out which is the preferred scientific choice or a philosopher to tell you the correct moral choice.

  • rate this
    +8

    Comment number 125.

    6 Mary Ruwart aka Sally of the multiple identities.

    Libertarianism and Ebola hype stories have absolutely no connection to each other.

    PS mods - there are no email addresses or other contact details in this posting.

  • rate this
    -6

    Comment number 124.

    No mention this was the drug given to two US doctors who were evacuated back to the US, and are making a remarkable recovery.

    I disease with no known cure suddenly has one waiting in the wings when it affects americans. Why would an american drug company spend money developing ebola drugs if it only affected africans and therefore there was no money in it.

    Problem, Reaction, Solution.

  • rate this
    -4

    Comment number 123.

    What worries me is that the drugs are probably Statins!

  • rate this
    -11

    Comment number 122.

    Lets be honest, ethics has spit all to do with it.

    In UK, our ethics allow 10,000+ people a year to die unnecessarily from polution in our citys, + 15,000 pensioners every year to die from cold, you know, the present older generation that did all to prevent us becoming Germans.

    Got spit all to do with ethics & all to do with potentially damaging economies & profits, people are incidental

  • rate this
    +4

    Comment number 121.

    Let's not forget it's only about a century since influenza killed millions across Europe. If that hadn't happened then the current population crisis would be exponentially worse than it is already.

    Everything in nature has to have a clear-out now and then... otherwise evolution doesn't happen.

    If you think mankind will be here forever then you're seriously deluded.

  • rate this
    +3

    Comment number 120.

    I have been on prescribed but unlicensed drug for a medical condition.

    Existing drugs weren't working with my health deteriorating; the unlicensed drug offered significant hope albeit with risks attached.

    In my case I was able to analyse the options and risks prior to making MY decision.


    However, it is essential for patients to understand the ir options and the potential risks attached.

  • rate this
    +1

    Comment number 119.

    Let's be honest - compared to the number of people throughout the developing world who die from diarrhoea every day, the ebola deaths are a tiny fraction.

    But, there is relatively little risk of diarrhoea spreading to the UK/USA etc. The concern about ebola shown by the wealthier/healthier nations is understandable but inevitably motivated by self-interest.

  • rate this
    +5

    Comment number 118.

    If I had Ebola, I'd take pretty much whatever was on offer, experimental or not. Any side effects couldn't be much worse than the disease.

    As long as the patient is told that it's experimental and informed of the known issues, then there are no ethical problems.

  • rate this
    -1

    Comment number 117.

    Let them take whatever they wish to but let's not get the British taxpayer to foot the bill!

  • rate this
    +5

    Comment number 116.

    I don't see an ethical problem if the patient is given adequate information that it is an experimental treatment, that there's no other alternative therapy, and that he or she has the opportunity to say no.

    Also, I hope some money is being given over to info leaflets on Ebola for local people so they'll understand more about it and perhaps defeat the stigma that exists in some places.

  • rate this
    -1

    Comment number 115.

    Ebola hasn't captured the public imagination it has simply been rolled out as a scare story by the press. A press that don't like to take any responsibility for their actions.

  • rate this
    +5

    Comment number 114.

    Is there really even any debate?? If anyone has the audacity to sue someone for giving them an experimental drug when they only had a 10% chance of living then they probabaly should have been left to their own devices in the first place.

    Where do these people get off??

  • rate this
    +9

    Comment number 113.

    68.Mary Ruwart
    Without a costly regulatory drug efficacy regime stifling innovation and competition, drugs cost more than they would otherwise.
    ---
    They also kill far less people than they otherwise might.
    Allowing quacks to peddle dangerous drugs on the premise of their low cost is exploitative.

  • rate this
    0

    Comment number 112.

    It's not an ethical question but a legal and political one. Basically if this drug is handed out and 4 years from now everyone was made sterile (as an unknown side-effect) than outrage against the west would be immense, furthermore law suits would be thrown everywhere because it is inconcievable to have every person sign a waiver.

    The scale is too high for risks.

  • rate this
    0

    Comment number 111.

    The post that suggests, quite sensibly, that a travel ban from this area should be imposed is marked down. Then another poster writes this: "Ebola kills 90% of its victims, their internal organs liquidise and bleed out through the orifices of the body."

    So if this disease makes it to the Uk from a this area of Africa, who will the people marking down posts blame? Ah, of course the government.

  • rate this
    -4

    Comment number 110.

    I find it interesting that over 800 people had died until an American got Ebola, then sent to the states where they had a drug to already try out?

    Wakey Wakey

  • rate this
    +3

    Comment number 109.

    The mortality rate of Ebola is 90%.

    If someone offered me some untested drugs, I'd play the odds and take them... a 10% chance of survival isn't good; any drug, even if a possible side effect was death, couldn't make things much worse.

    In this particular case, I'd suggest binning the ethics and trying to save lives.

 

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