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“Um… have you seen Outbreak?”
This is what a very smart doctor friend of mine posted to my Facebook wall yesterday. She was referencing the medical disaster film about a deadly virus during a discussion about the ethics of using experimental treatments for Ebola victims. She was exaggerating for effect, of course, but she was making a very serious point. When the alternative is pretty much a gruesome death, why on earth not permit the use of unproven and untested treatments?
As it turns out, I agree with her. It would be unethical not to. The only way to find out if these treatments really work is to test them in this epidemic. However, it would also be wrong to think that, terrifying as they may seem, epidemics like Ebola mean that research ethics go out of the window. In fact, as the World Health Organisation recognised in a statement on Tuesday, ethics has to be at the heart of research into experimental interventions – 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.
Despite appearances, the point of ethics isn’t to slow research down, or to tie researchers and aid workers up in bureaucratic knots while they try to cope with deadly diseases. The point of ethics is to ensure the safety of participants and the soundness of the research. Now, worrying about the safety of participants during an epidemic that has no cure may seem perverse, but considering that Ebola is not, in fact, 100% fatal (mortality rates vary from 50%-90% depending on the strain) means that the seemingly compassionate distribution of experimental therapies could do more harm than good. Remember: we don’t know if they work. Which is why those who participate must be free to do so and fully aware of the risks.
Decades ago, HIV/Aids activists campaigned successfully for access to experimental treatments on the grounds that the alternative was, for them, death. Yet it was not just a “do or die” calculus that gave their claim moral weight – they were a well-informed patient population, freely entering into research. They understood the risks; they were not coerced. Rather, they eventually became partners in the research enterprise (shaking that enterprise out of some outdated assumptions while they were at it).
For the provision of experimental treatments in the Ebola epidemic to be ethical, it must be ensured that the communities receiving those treatments are also able freely to enter into a transparent and fair research partnership. This is why the WHO statement should be seen as just the beginning of a wider, global discussion that must include multiple voices from the affected nations in Africa. They must be free to decide how this would work out in their cities and villages.
But why bother about transparency, freedom and fairness when there are lives at stake? In short, because it saves lives. The history of medical research in Africa is littered with horrific examples of western science running roughshod over the rights and liberties of local peoples. This colonial legacy can manifest in an understandable and quite justified culture of uncertainty and mistrust around the objectives of western researchers, despite their best intentions. When communities in which research is done feel that scientific agendas are being imposed upon them by outside powers, that legacy is exacerbated. This can only make it more difficult to do the good, reliable science we need to combat epidemics.
Actually finding out whether the experimental treatments for Ebola and other epidemics work is only possible if affected communities believe that their interests and values are respected. This only happens when researchers act ethically. Imagine an outbreak of Ebola in Birmingham, say, and the EU pitching and running experiments without consulting with the city council, or failing to share the results of the experiments, and you begin to see how things might go wrong when you ignore people’s freedoms and rights.
This is why, during epidemics, it is essential that ethical criteria guide the provision of any experimental treatments. It’s not just the right thing to do morally, it’s the right thing to do scientifically. We all want this research to get done – it would be immoral not to do it. All the more reason to ensure that we do it right.
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