How to Be Free: Objectification and the Noumenal World An Impression of Neil Levy’s First Leverhulme Lecture
When I was a medical student and doctor, there were a few legendary teachers at the Alfred Hospital. The greatest of these was a general physician called Y Lim. He was the Sherlock Holmes of bedside clinicians. He would take groups of medical students to see a patient and diagnose the patient “from the end of the bed”, just by observing carefully the paraphenalia around the patient’s bed, the medication and the movement of the side of their chest.
He was highly sought after as tutorials with Y Lim spelt success in the clinical examinations. I never had him but my friends in the year before did. At the end of their last tutorial, just before the final examinations, they asked him, “Y Lim, how do we do well in the short and long cases? How can we become a doctor?”
Y Lim replied, “Look like a doctor. Talk like a doctor.”
Three Ordinary Agents
Consider the following 3 people (philosophers call them “agents” because they do stuff, like secret agents do stuff secretly). They are all based on real life characters.
Julian Savulescu discusses the ethics of mitochondrial transfer
Imagine that there was a law which prevented 150 children a year suffering from a life threatening liver or kidney failure from receiving a transplant. This would be unethical. But this is precisely the current state of affairs for around 150 children every year in the UK suffering from mitochondrial disease, or mitochondrial failure.
From an ethical perspective, mitochondrial transfer is most accurately described as a form of transplantation, or “micro-organ” transplantation.
An elegant example of biopsychosocial (BPS) impacts on our health has been reported today.
It has long been reported that chronic stress reduces fertility: it reduces libidos, reduces the likelihood of a pregnancy, and increases the risk of miscarriage.
Scientists from the University of Berkeley have shown that blocking the gene for a hormone – called gonadotropin inhibitory hormone (GnIH) removes the impact of the stress on fertility levels in rats, and restored a normal rate of pregnancy.
If this translates to humans, it could have major impact. According to the University of Berkeley press release:
“Stress is thought to be a major contributor to today’s high levels of infertility: Approximately three-quarters of healthy couples under 30 have trouble conceiving within three months of first trying, while 15 percent are unable to conceive after a year.”
The BPS model explores causal interaction between the biological, psychological, and social factors in illness (usually in the context of understanding mental illness). This might be one of the more simple biopsychosocial interactions. Kenneth Kendler’s fascinating Loebel Lecture series unpicked some complex interactions (video and audio available on the Oxford Loebel Lectures and Research Programme website).
But it raises an interesting ethical question, and one that frequently arises in the enhancement debate. Should we take a biological solution, when an environmental solution is available?
Utilitarianism is a widely despised, denigrated and misunderstood moral theory.
Kant himself described it as a morality fit only for English shopkeepers. (Kant had much loftier aspirations of entering his own “noumenal” world.)
The adjective “utilitarian” now has negative connotations like “Machiavellian”. It is associated with “the end justifies the means” or using people as a mere means or failing to respect human dignity, etc.
For example, consider the following negative uses of “utilitarian.”
“Don’t be so utilitarian.”
“That is a really utilitarian way to think about it.”
To say someone is behaving in a utilitarian manner is to say something derogatory about their behaviour.
Research ethics committees often behave unethically*. One example is their failure to understand the ethical basis for obtaining consent and the appropriate limitations. There is a simple rule – “get consent”. I discuss this in greater detail in Bioethics: Why Philosophy Is Essential to Progress, JME 40th Anniversary Issue.
But ethics is more complicated than this. It involves the weighing of different ethical reasons. Sometimes, those reasons can speak overall in favour of not obtaining consent in the way prescribed by various ethical guidelines. Deliberation is required. It is import to also consider the value of good research.
I was Chair of the Department of Human Services Victoria Ethics Committee between 1998-2002, I tried to improve various aspects of research review. You often don’t know if anything you do has any beneficial effect. But recently, Pam Snow came up to me after a lecture. I couldn’t remember her but she kindly told me her story. Here it is. I am relating it as a case study in how “deliberative” research ethics review can actually do some good. I asked her to put her thoughts in writing to show how ethicists can work with researchers to find a way to bring about a good outcome.
The first advert for the sale of a clinical trial place offers, for $2 million, the chance to participate as a patient in a trial investigating the Farmington virus (FARV) and its potential efficacy in treating certain forms of brain tumours. Meanwhile, Alexander Masters has written convincingly about his idea for a clinical trial dating agency: matching wealthy but sick donors with scientists who have an idea for a cure but no money for a trial (shorter version also available). In Masters’ idea as in the real life case, the proposal is that the wealthy donor will pay not just for himself or herself, but enough for the trial to go ahead with a full complement of those who could not otherwise afford it, recruited on the same basis as any trial.
Predictably, ethical concerns have been raised, perhaps the main one being equality: “In the UK, the principles in participating in clinical trials include open and equal access for those who chose to participate” (Kate Law, director of clinical and population research at Cancer Research UK, quoted in The Telegraph ).
The new DPP Alison Saunders has clarified the Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide issued by the previous DPP, Keir Starmer, in 2010. This has led to claims by right to life groups that assisted suicide will be available in the UK. This is, I argue, false. Assisted suicide remains a crime. I argue a better alternative under current law is Voluntary Palliated Starvation. This could render unconscious patients who embark on suicide by starvation and dehydration, such as the recent tragic case of Mrs Jean Davies. This could be lawful under current law and acceptable to doctors who do not wish to kill, but wish to relieve suffering.
The first patient to be diagnosed with Ebola outside of West Africa has been reported. He is now in the US, receiving treatment. He arrived from Liberia via Brussels before reporting symptoms, which were initially mis-diagnosed and treated with antibiotics.
If I were in West Africa and I had reason to fear I had been exposed to Ebola, do you know what I would do, if I had the resources? I would not wait to see if symptoms appeared or to be diagnosed, I would fly to the US or Europe, where, if symptoms developed, I would receive the very best health care in the world, including experimental treatments, in front of the world’s media.
If I could afford it, even selling everything, I would get on that plane to freedom, or at least a chance. A better chance to live.
But of course along the way, I would expose others to the risk of infection, and I would risk introducing the infection to areas of the world that are currently Ebola-free. It is unlikely, even so, that it would reach the levels seen in West Africa, as these countries have the resources and infrastructure to implement more effective containment strategies. Nevertheless, there is a chance that some people would die.
So how much freedom should people have? Should our freedom to travel be balanced against the risks it might pose to others?
Summary: Patients potentially infected with Ebola have the right to experimental treatment outside of randomised controlled trials. Consent should be sought while they are competent if it is anticipated that they will lose competency through the disease. In the most extreme emergencies, experimental treatment could be given without consent in the public interest. However, in such extreme emergencies, such if the virus were to mutate to become very highly transmissible, selection of patients for such trials should be on a principle of justice. This would generally require selecting patients with the worst prognosis as initial subjects. Whilst the current outbreak has been declared an international health emergency, it does not warrant over-riding standard ethical principles of consent and autonomy.
WHO are convening a meeting next week to discuss the use of untested treatments for the current Ebola outbreak, which it has declared to be an international public health emergency.
Dr Marie-Paule Kieny, Assistant Director-General at the World Health Organization explained “We are in an unusual situation in this outbreak. We have a disease with a high fatality rate without any proven treatment or vaccine,”
With a fatality rate of recent outbreaks at around 50%, and current treatments consisting of little more than rehydration, it is easy to see why this experimental approach is an attractive option. Jeremy Farrar, David Heymann and Peter Piot argued convincingly in favour of such measures.
However, there are a number of diseases which meet Dr. Kieny’s criteria of “a high fatality rate without any proven treatment or vaccine”. While Kieny is referring to infectious disease, sufferers of other diseases have campaigned for many years for access to untested medicines. Along with several colleagues, I wrote a paper on this subject with Les Halpin, who recently died from motor neurone disease, having campaigned for access to medicines for many years
The case for
I have argued that, when a patient is facing a certain death from an incurable disease, the relative safety that randomised controlled trials provide is unnecessary- especially when the payoff is a placebo group of patients who receive no benefit at all.
One common reason in support of randomised controlled trials is safety. This is true for most patients: patients for whom there are other good treatment options, or whose disease is not itself life-threatening. But for some patients, this concern is a cruel irony. Their disease is so overwhelmingly unsafe that any risk is outweighed by potential benefits. Udo Schuklenk reports Martin Delaney, a trial patient for AIDS who described the situation vividly:
It is as if I am in a disabled airplane, speeding downward out of control. I see a parachute hanging on the cabin wall, one small moment of hope. I try to strap it on, when a would be government employee reaches out and tears it off my back, admonishing, ‘You cannot use that! It does not have a Federal Aviation Administration sticker on it. We do not know if it will work’