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Medical morals

Who gets experimental drugs and who doesn’t? The ethics of Ebola treatment

Liberians read the Daily Talk chalk board on the Ebola outbreak situation in Monrovia. Ahmed Jallanzo/EPA

The current outbreak of Ebola is the worst in history. Almost 2,000 people have been infected and around 1,000 people have died. The outbreak seems to have originated in Guinea and has now spread to Sierra Leone, Liberia and Nigeria. Patients infected with the virus have also been evacuated from West Africa to America and Europe.

These developments do not a pandemic make, but the situation has been described as an international public health emergency.

Ebola Hemorrhagic Fever is, as its name suggests, a fearsome thing. The responsible virus causes some very unpleasant symptoms, kills most of those it infects and spreads reasonably easily. To make matters worse there is no known cure or vaccine.

The World Health Organisation (WHO) is scrambling to deal with the situation. Emergency meetings have been convened and measures to prevent the further spread of the disease are being implemented. The World Bank has also offered to provide $200m in emergency assistance and the British Red Cross has launched an emergency appeal to help those who have been infected.

The WHO has also announced that it will convene a panel of ethics experts to make recommendations about the use of experimental treatments. This follows a controversial decision to give a drug that had never been tested in humans to two American citizens. Convening a panel of ethics experts as a matter of urgency is a relatively unusual step and hints at the depths of concern that exists among medics and bioethicists.

What will the ethics panel decide?

It is unclear at this stage who will sit on the ethics panel. Nor is it clear what status the panel’s recommendations will have. It is, however, relatively easy to determine the kind of ethical issues the panelists will discuss.

In the first instance the panellists will want an accurate summary of the scientific evidence regarding the safety and efficacy of any experimental drugs that might be used in this crisis. They will also want to know about the precise nature of the current Ebola outbreak. In particular, they will want information about the morality rate, which currently seems to be hovering around 60%.

They will need this kind of empirical data because an ethical decision about whether or not to make experimental drugs available cannot be made without a careful analysis of the potential risks and benefits. The panellists’ discussions around these issues will be especially intense. This is because the scientific evidence is scant and there is a real concern that one of the fundamental ethical principles of medicine will be violated if the drugs are used and end up causing more harm than good.

The ethicists will also want to think about the ramifications of giving people access to experimental research drugs which have not been tested in humans. Drugs that have not yet been approved by regulatory authorities are sometimes given to patients on compassionate grounds when there is no other treatment available. However, this particular decision is being made in the eye of a medical and a media storm. This means that a decision to use experimental drugs in this case could set a dangerous precedent.

Normally, new medications have to pass through a rigorous set of clinical trials before they are approved. This is to ensure that the drugs are both safe and effective. Subverting this process may make sense in rare cases. But it is important not to “normalise” this kind of action otherwise the whole edifice of evidence-based medicine will come tumbling down.

The principle of autonomy will also loom large in the pannelists’ discussions. It will be said that competent patients who are infected with a life-threatening virus should be allowed to make up their own minds about whether or not to take an experimental drug. Others, however, will argue that people who are seriously sick and seriously scared will struggle to process relevant information in a way that enables them to make free and informed decisions. Some will also worry that many of those affected in the current outbreak have little in the way of formal education and thus may not understand enough about biology, medicine or drug experimentation to give informed consent.

Yet another issue that will be on the table will be the concept of human rights. A legal right to healthcare is enshrined in a number of international documents, including the United Nations International Covenant on Economic, Social and Cultural Rights. The Constitution of the World Health Organisation also states that the “enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being”. However, even if the panellists agree that moral and legal rights to healthcare exist, it is less certain that they will also agree that people have a moral and legal right to experimental healthcare.

If the panellists do decide to recommend giving access to experimental drugs they will have to make recommendations about the allocation of what is, at least for the moment, a very scarce resource. Claims that black Africans are being left high and dry whilst white patients from wealthy countries are given access to experimental drugs have sparked much anger.

If more drugs are to be made available it is essential that they be distributed in a way that is transparent and fair. Quite what a just allocation of a very scarce resource will look like is not easy to say. Difficult questions about whether to prioritise infected healthcare workers will have to be answered. However, one thing is ethically obvious: access to these drugs should not be limited to Americans.

The underlying problem

Whatever recommendations the ethics panel come up with the underpinning ethical issue – the gross inequality of global wealth, health and healthcare – will not be addressed. Given the narrow remit of the panel this will be understandable, but it will still be unfortunate.

The reason why Ebola is spreading so quickly and killing so many is because countries like Liberia simply do not have the resources to deal with it. And until the international community drastically reduces the poverty that is both a cause and an effect of ill-health the problems that we are currently seeing in West Africa are going to keep recurring. Fortunately this is not just a matter of altruism. We now live in an interconnected world and thus we are all potentially vulnerable. After all, if there is one thing that is true of communicable diseases it is this: they do not respect borders.

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