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 ).
Reproductive technologies were in the headlines when Facebook and Apple announced they would offer female employees a $20,000 benefit to freeze their eggs. According to the report, this enables women to delay child bearing for different reasons and gives women more control. The announcement states that egg freezing is a pricey but increasingly popular option for women: The procedure typically costs up to $10,000, with an additional $500 for storage each year. After freezing eggs, in vitro fertilisation (IVF) can be used afterwards.
I wish to start with a disclaimer: I’m totally for increasing control and flexibility with reproductive technologies, I think the possibility as such is great, I cheer if some women genuinely wish to use this option, and I totally recognize that Facebook and Apple are just giving an option. However, there is room for questions. First, individual-level solutions are suggested where the actual issue is likely to be socially constructed, and secondly, IVF is seen merely as a handy option. These two are discussed in the following. Continue reading
“Now we must wait, wait. These hours…. The gurgling starts again — but how slowly a man dies! …By noon I am groping on the outer limits of reason. …every gasp lays my heart bare.” Erich Maria Remarque, All Quiet on the Western Front
In Remarque’s novel, the agony of the German soldier, witnessing the slow death of an enemy combatant, is heightened by his own guilt (the narrator had stabbed another soldier in self defense). However, his powerful evocation of distress (and guilt) at witnessing a slow dying is very close to the expressed concerns of parents and clinicians who are watching the death of a child.
A recent article by Marc Bekoff, written for the website The Dodo, asks whether it might be true that researchers who currently test on animals are less humane than their predecessors. Bekoff thinks it is. His reasons for that belief seem to be something like the following: We know considerably more about the cognitive and emotional faculties of animals now than we did in the past. That is, we know that even smaller mammals and birds can be quite cognitively sophisticated and emotionally developed. In the face of this knowledge, our continued use of those animals for the purpose of conducting research is less humane than it was at a time when we believed animals to not possess any such faculties. Bekoff uses this belief to cast doubt on the ethical status of continued research on animals. If we are being less humane in our research now than we used to be, then we are also being less ethical. It’s not clear to me that this inference is correct. Continue reading
In an article soon to be published in the Journal of Medical Ethics, Rob Sparrow imagines a procedure via which multiple generations of human embryos might be created in the laboratory. Egg and sperm cells would first be generated from existing or new human pluripotent stem cell lines. The resulting eggs would be fertilised using the sperm to create zygotes and ultimately embryos. Embryonic stem cells would then be harvested from these embryos and used to create new egg and sperm cells, which would in turn be used to fertilise one another to create further embryos. This process could be iterated, in principle indefinitely.
Let’s call this procedure ‘iterated in vitro reproduction’ (Sparrow calls it ‘in vitro eugenics’). Iterated in vitro reproduction is not yet possible, but, citing recent developments in the science of stem cell-derived gametes, Sparrow argues that it may well become so, though he acknowledges are number of significant hurdles to its development. He also discusses a number of possible applications of the technology and calls for an ethical debate on these. The most controversial application would be in the creation of designer children. Consider the following case, which is a variant on one of the scenarios imagined by Sparrow:
Jack and Jill present to a fertility clinic. Jack provides a sperm sample, and fertility doctors harvest a number of eggs from Jill. These eggs are fertilized with Jack’s sperm to create embryos, from which embryonic stem cells are derived. These stem cells are then induced to develop into eggs or sperm which are used to fertilise one another, and so on. The process is iterated numerous times, and at each stage, the embryos are genetically screened via pre-implantation genetic diagnosis. This screening is used to inform a process of selective crossing, so that, over several generations, the population of embryos evolves towards certain genetic dispositions desired by Jack and Jill (a disposition towards longevity, say). This process is aided by adding small amounts of genetic material from stem cell lines derived from other individuals. Eventually, doctors identify an embryo with almost exactly the desired combination of genes, and this embryo is implanted into Jill’s womb and carried to term. A child, Jarvis, is born.
Cases like this raise numerous ethical issues, some of which are discussed by Sparrow and the seven commentators on his paper. However, they also raise an interesting conceptual question: would the users of such a technology be the genetic parents of the resulting offspring? Would Jack and Jill be the genetic parents of Jarvis?
By Dominic Wilkinson (@Neonatal Ethics)
Late last month, a paper in the US journal Obstetrics and Gynecology reported the extraordinary case of Abigail Beutler. Abigail is now 14 months old. She was born without kidneys, a condition sometimes called ‘Potter’s syndrome’. Potter’s syndrome is normally universally fatal in the newborn period, because without kidneys the fetus does not produce urine and has little or no fluid around them. Without any fluid around the fetus, their lungs do not develop.
Abigail is the first baby to ever survive with this condition. Doctors infused artificial fluid into the uterus around her (amnioinfusion) on five occasions during the pregnancy. This seemed to allow her lungs to grow. Although she was born 3 months prematurely, she had only minor breathing problems at birth. She has received kidney dialysis since soon after birth, was discharged home after 19 weeks and is now reportedly being considered for a kidney transplant. Continue reading
This week at the centre we are excited to be launching a new series of podcasts “Practical Ethics Bites“
These podcasts have been recorded to support secondary school students (particularly A-level students) who are studying philosophy or religious studies and their teachers. They are available to download (free) from the podcast webpage, and you can subscribe to the series through iTunes U.
The interviews cover a set of core topics in applied ethics, and aim to provide an accessible introduction to key arguments, and concepts. They were recorded by philosophers Nigel Warburton and David Edmonds, the team behind the popular Philosophy Bites series.
We will be releasing more podcasts over the next two months, but the first interview is already available – ‘Should euthanasia be legal?’ – interview with Dr Dominic Wilkinson (@NeonatalEthics), consultant neonatologist and Director of Medical Ethics at the Oxford Uehiro Centre.
We are keen to get feedback on this podcast series from students and their teachers. Are the interviews at the right level? Are they helpful? What topics would be useful for future podcasts to cover? As an incentive, students/teachers who provide feedback will be entered into a draw for a set of the Philosophy Bites books (generously donated by David Edmonds and Nigel Warburton)! For details see here.
Frank Van Den Bleeken wants to die. He is not physically ill, but claims to be suffering from persistent mental anguish, from which death will provide him with some release. And as a Belgian man, living in Belgium, we might ordinarily expect him to be able to take advantage of that country’s fairly liberal euthanasia laws. Whereas many of the assisted dying regimes around the world specify that the person who wants to die must be terminally ill to qualify, Belgium has seen several cases in which people have been helped to die for reasons that do boil down to psychological distress: in a couple of fairly well-reported cases, Marc and Eddy Verbessem were deaf twins who feared blindness and sought death on that basis, and Nathan Verhelst sought it in the wake of unsuccessful gender-reassignment surgery.
What makes Van Den Bleeken particularly newsworthy is this: he is a convicted killer and rapist. According to the CBC, he had argued that “he had no prospect of release since he could not overcome his violent sexual impulses and so he wanted to exercise his right to medically assisted suicide in order to end years of mental anguish”. It’s not clear whether the anguish came from being in prison, or guilt, or something else. This might make a difference; I’ll touch on that below.
What should we say about the morality of such a case? Continue reading
It’s still summery, and so here is a little story for the beach or the side of the pool
‘There are challenges, certainly’, said the Boss. ‘But we’re confident that we can meet them. Or at least’, he went on, looking over his glasses for signs of dissent, ‘for a critical mass of stakeholders’.
A graph appeared on the screen at his side. He traced its lines with a red laser dot.
‘Here’, he said, ‘we have the expected rise of temperature with time. And here’ (he stabbed with the dot, as if doing the killing himself), ‘we have the consequent reduction in human population – assuming’ (and he held up a schoolmasterly finger), ‘we don’t have any HR66.’
He sipped some water, and waited for this to sink in. It did.
‘But don’t worry’, he said. ‘There’s good news. We do have HR66. Not enough for everyone, sadly, but enough to ensure that the human baton is passed on. And enough, I’m glad to say, for everyone in this room.’
There was a ripple of relief.
‘And their families, of course’, the Boss continued. ‘Families are very important to us. But all this assumes that you want to have the HR66. No one will make you. But, frankly, what’s not to like? You take a single dose, and you survive. If you don’t take it, you don’t survive. It’s as simple as that. It even tastes of candy floss. It has only one side-effect, and that’s a wholly good thing. It increases – increases, mark you – your IQ. Very, very significantly. By about 100 points, in fact. Not only will you be alive; you’ll be a genius beside whom Einstein would have seemed a hopeless retard.’
One more press of the button, and up flashed the logo of the corporation that manufactured HR66. The Boss didn’t think it relevant to mention his shareholding.
‘Naturally’, said the Boss, ‘we have to vote for this in the usual way. Yes, humanity’s facing apocalypse, and there’s one, and only one way out. But we’ve still got to do things properly. But I expect that we can move to a vote now, can’t we?’
‘I’m sure we can’, agreed the Deputy. ‘You’ve all seen the motion. All those in favour….’
The Boss and the Deputy, up on the podium, stared. Everyone else turned. A little man in tweed lisped through a badger’s beard. ‘I’d like some clarification, please.’
‘But of course, Tom’, said the Boss, magnanimous and desperately alarmed. ‘Anything you like.’
No one really knew how Tom had got into the government, or why he wanted to be there. He had no strategically significant connections, no dress sense, no publications other than some monographs on moths and mediaeval fonts, no assets other than a dumpy wife, some anarchic, unwashed children and a small cottage on Dartmoor, and no entries in the Register of Members’ Interests apart from ‘Masturbation’. This entry had caused a terrible storm. He’d been accused of injuring the dignity of the House, but, after expensive legal advice had been taken, it had been ‘reluctantly concluded’ that there was no power to force him to remove it.
‘I’d like to know’, said Tom, ‘who’s going to get the drug. And why them rather than anyone else.’ Continue reading
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’