Ethics of Ebola and Potentially Life-Saving Experimental Treatment

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.

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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’

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Lord Winston’s warning

Last month, Lord Robert Winston delivered the Physiological Society summer lecture entitled, ‘Shall we be human in the next century?’ You can watch it in full here (the stream starts working around 5”30 onwards). In the lecture, Lord Winston discusses the history and misuse of gene science and eugenics, and points to the potential resurgence of this way of thinking, made possible by advances that would allow us to genetically enhance human beings by modifying their nonpathological traits. Winston would be classified as a ‘bioconservative’ in the contemporary enhancement debate, and below I examine the case for caution that he puts forward in this lecture.

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Welfare 2.0? Abbott, Forrest and the “Healthy Welfare Card”

A recently released review by Australian mining magnate Andrew “Twiggy” Forrest (news article available here, full report available here) investigating training and employment for Indigenous Australians has made a controversial recommendation for the introduction of a “Healthy Welfare Card” for all recipients of welfare assistance in Australia, except for those on aged or veteran’s pensions.

The Healthy Welfare Card

The Healthy Welfare Card is the centerpiece of a new cashless system proposed by Forrest, to encourage responsible spending, reduce welfare fraud, administration costs, and increase financial inclusion. Future welfare payments, he envisions, will be directed to an account at a nominated responsible financial institution, presumably one of the Four Pillars of Australian banking. The Healthy Welfare Card is the direct debit card linked to this banking account, but with a twist – spending on “alcohol, gambling products, illicit services and instruments that can be converted to cash (such as gift cards) and…activities discouraged by government, or illegal in some places, such as pornography” will be restricted, presumably by prohibition of certain retail outlets or at the point-of-sale. The card will be usable at all Australian retail stores that accept VISA or MASTERCARD via EFTPOS facilities (except for the aforementioned), but will not permit the withdrawal of cash.

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Being ethically responsible to see ethical complexities: What Israel can teach us about ethics

As I write this, at least 1,474 people have died in the recent outburst of violence in Gaza. A vast majority (1,410) of those are Palestinians. Throughout the last weeks, those of us who are open-minded enough to consume different types of news will have read very, very different assessments of what is happening. Some express the in other contexts quite popular opinion that we don’t measure ethics by counting dead bodies. A group of medical doctors published an open letter in The Lancet denouncing the aggression in Gaza by Israel. Washington Post published an opinion piece with the title “Moral Clarity in Gaza” which proclaimed that the situation is very clear: it is Hamas’ fault, and Israel is only exercising its rights. The New York Times made an attempt at being impartial by letting three experts on each side publish their views of what goes on. A group of prominent International Law experts wrote a joint declaration calling the international community to, among other things, use its power to stop the violence, and encouraged the UN Security Council to exercise its responsibilities and refer the situation in Palestine to the Prosecutor of the International Criminal Court. And so on. The disagreements run abysmally deep. Imprudent as it might feel to open ones mouth about a topic as infested as this, as someone working on ethics, I feel compelled to think about what ethics can do in this situation.
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Lord Falconer’s Assisted Dying Bill: Is Slow Assisted Dying Legal?

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.

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When Cupid fires arrows double-blind: implicit informed agreement for online research?

A while ago Facebook got into the news for experimenting on its subscribers, leading to a fair bit of grumbling. Now the dating site OKCupid has proudly outed itself: We Experiment On Human Beings! Unethical or not?

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Carbon caps and IVF

by Dominic Wilkinson @NeonatalEthics

Over on the Journal of Medical Ethics blog are a couple of posts that might be of interest to Practical Ethics readers.

Last week, the journal published online an article by Cristina Richie on carbon caps and IVF. She argues that the environmental costs of reproduction should lead to carbon caps on IVF, and more restrictive public access to artificial reproduction.

Iain Brasssington wrote a blog in response, ‘ARTs in a warming world‘. He wrote:

“while reproduction may be a good, it is not the only good at which persons or policies may or should aim; and there are times when two goods conflict.  Neither is it too strange to suggest that there are times when a person should abandon one good because of the greater moral gravity of some other, greater, good.  It’s possible that reproduction is one of those goods.”

I also wrote a blog in response to Richie, arguing that “Gaia doesn’t care where your baby comes from“. From an environmental point of view there seems little reason to place limits on artificial but not natural reproduction, or to restrict publicly funded IVF (as Richie suggests) to the “biologically infertile”.

Finally, Iain wrote a follow-up piece about conflicts of interest and ethical analysis. Some had criticised Richie’s arguments on potentially ad hominem grounds. Brassington argues (persuasively) that what matters are the arguments, not their origins.

[Feel free to comment over on the JME blog]

Evolutionary psychology and multidisciplinary challenges

Evolutionary Psychology has recently gained some public attention in Finland, as the University of Turku has announced that it will establish the discipline as a permanent study module from the beginning of autumn 2014. University of Turku reports itself to be among the first universities in Europe to provide studies in this discipline[1].

Evolutionary psychology (EP) is a debated discipline, and its institutionalisation adds some weight to the debate. A thorough discussion of its “pros and cons” are beyond this entry – instead, I am interested on the manner in which this relatively young and multidisciplinary discipline is debated.

Most debaters seem to have a strong opinion about EP. It can be seen as the Grand Theory answering all the questions of humanity, or as pseudoscience without slightest scientific background. Obviously, none of the extremist positions is sensible.

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Geoengineering: Lessons from Human Bioengineering

[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.

One source of radical solutions is the growing geoengineering industry. Recently proposed methods for the sequestering of carbon dioxide include  ants, iron sulfate  and artificial trees .

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?

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The Indignity of Imprisonment

            Do we need to radically rethink the practice of imprisonment of criminals – not in the direction of novel forms of punishment, but rather in the form of vastly reducing punitive imprisonment altogether?  While prisons are integral to modern criminal justice system, a report from the British Academy earlier this month puts serious pressure on the institution.  Their overall argument is that we should move away from current levels of incarceration and focus on alternative responses to criminality like fines, rehabilitation programs and restorative justice.  Part of the report rehashes familiar empirical, consequentialist arguments for prison reform: prisons are expensive, they have deleterious effects on society, they have unclear deterrent effects, and so on.   Those arguments are relevant and important, but in this post I’d like to focus on the more theoretical, non-consequentialist arguments for prison reform.  The British Academy report argues that, in essence, current imprisonment practices are incompatible with the values of liberal democracy.  This is roughly in line with a growing body of philosophical literature militating against mass incarceration and other forms of punishment.  Here, I’ll go through some of the report’s arguments (and one of its weaknesses), as well as introduce an alternative account I’m developing that links up the imprisonment debate with the torture debate and emphasizes a respect for dignity and humanity. Continue reading

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