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’
In 2005, the NZ Herald reported. “A man with motor neurone disease plans to starve himself to death rather than wait to die.
“Thirty-nine-year-old Andrew Morris of Hamilton has limited movement and can barely speak. He has gone public with his decision because he wants law changes to allow voluntary euthanasia.”
Such cases occur not infrequently, around the world. Last month, John Rehm took his life by dehydration. NBC News reported:
Diane Rehm and her husband John had been married for 54 years when he knew he didn’t want to live another day.
His Parkinson’s disease had become unbearable. “He just kept getting weaker,” the NPR host told NBC News. “We called in the doctor and John said to him: ‘I am ready today.’ He said ‘I can no longer use my legs, I can no longer use my arms, I can no longer feed myself.’ And knowing with Parkinson’s it is going to get worse rather than better, he said ‘I wanted to die.’” He asked the doctor for help.
The answer they got surprised and disappointed both of them. “The doctor said ‘I cannot do that legally, morally or ethically’,” Rehm said. “He said ‘I don’t disagree with your wish that you could die with the help of a physician but I cannot do it in the state of Maryland.’”
John Rehm had to deliberately die by dehydration. It took nine days.
“John said he felt betrayed,” Rehm said. He said, ‘I felt that when the time came, you would be able to help me.’”
In a recent, short commentary on the sad case of Tony Nicklinson, I argued that two basic moral rights effectively equate to a legal right to slow assisted dying. In one sense, Rhem’s doctor was wrong.
Firstly, everyone, including Mr Hamilton, has a basic right to control what goes into their bodies, including food and fluids. Everyone has a basic right to refuse to eat and drink, even if this results in their death.
Secondly, everyone has a basic right to health care, including the relief of pain and suffering. As someone is dying, they have a right to palliative care to achieve that end. This includes the administration of narcotics and sedatives, as necessary to relieve their suffering and as requested by the patient. This is so, regardless of whether their suffering is self-inflicted or not.
[W]e have no non-radical solutions left to deal with climate change… either we face a radical climate catastrophe or we must radically shift our economy and modes of social organisation away from the current fossil fuel economy
That was the message given by David Spratt, author of Climate Code Red, and Ian Dunlop, who formerly chaired the Australian Coal Association but has since become a climate activist, at the Breakthrough 2014, National Climate Restoration Forum, last month in Melbourne, reported by Green Left Weekly.
Debate continues about when and how geoengineering might ever be deployed. Amongst environmentalists, support for geoengineering methods is low. Green Left Weekly explains:
as Clive Hamilton describes in his book Earthmasters, geoengineering technologies are supported by leading climate denial organisations and by the fossil fuel industry. This is because they seem to offer a way that fossil fuel use can continue unabated. The side effects of these technologies could be brutal: for example, severe drought in Africa and Asia. Moreover, if spraying was stopped, temperatures would rise rapidly, leading to even more devastating impacts.
Will regulation help? Green Left Weekly argues that governments have been unable to regulate fossil fuel industries effectively, and that they will be unlikely to succeed more here.
It is fruitful to look at comparisons with human genetic or biological modification, or human bioengineering.
Both are complex systems affecting life processes. There has been considerable debate and reflection on human bioengineering, human bioenhancement or genetic selection. Could the results of this reflection be of use in considering the ethics of geoengineering?
By Julian Savulescu. @juliansavulescu
The Australian newspaper ‘The Sunday Age’ reports today that “The Australian Sports Anti-Doping Authority has built a ”non-presence” drug case against 34 Essendon footballers, adopting a strategy similar to the one used to ban Lance Armstrong without a positive test.”
1. What should we think about this latest drugs “scandal” at Essendon, the so called “war on doping” in the Australian Football League (AFL), and in sport in general?
Imagine that you and your partner are having a baby in hospital. Tragically something goes wrong unexpectedly during birth and the baby is born blue. He urgently needs resuscitation if there is to be a chance of preventing permanent severe brain damage. How long would it be reasonable for doctors to wait before starting resuscitation? 15 minutes? 5 minutes? 1 minute?
What would be a reasonable excuse for delaying the commencement of resuscitation? They wanted to get a cup of coffee? The mother wanted to hold the baby first? The mother had catastrophic bleeding and this needed urgent attention?
If it were my baby, I would not want any delay in starting resuscitation. And there would be no justification for delaying resuscitation except some more serious, more urgent problem for another patient, such as the mother.
Yet when people choose homebirth, delay is precisely what they choose. It is simply not possible to start advanced resuscitation in the home within minutes. And their reason is not typically some relevant competing health concern that necessitates delivery at home.
Choosing home birth is choosing delay if some serious problem arises which requires immediate resuscitation.