by Professor Dominic Wilkinson, @Neonatalethics
Professor of Medical Ethics, Consultant Neonatologist
Our society has good reason to provide special treatment to people with severe brain injuries and their families.
But our current “special treatment” for a group of the most severely affected people with brain injuries leads to devastating, agonising, protracted and totally preventable suffering.
The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu
Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.
Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.
JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?
JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur. It could also be used to create embryonic stem cells with precise changes that might make subsequent stem cells, cancer-fighting stem cells, or even stem cells that fight aging. It could also be used to create tissue with say, changes to understand the origins of Parkinson’s disease or Alzheimer’s disease and develop drugs for the treatment of those diseases. This is what I’d call therapeutic gene editing, and because it stands to benefit millions of people who die every year of painful and debilitating conditions, we actually have a moral imperative to do it. What we ought to show more concern for and perhaps ban, is what might be called reproductive gene editing – editing embryos to create live-born babies that are free of genetic disease or perhaps more resistant to common, late-onset diseases or even enhanced in various ways. If we’re concerned about those sorts of changes in society, we can ban reproductive gene editing, yet also engage in the very beneficial research using genetically modified human embryos to study disease.
JB: And Margaret Somerville, what concerns you about this technology?
MS: Well, I’m interested in the division that Julian makes between the reproductive gene editing and what he calls the therapeutic gene editing. I’m a little surprised that he might not agree with the reproductive gene editing – that is, you would alter the embryo’s germline, so that it wouldn’t be only altered for that embryo, but all the descendants of that embryo would be changed in the same way. And up until – actually, up until this year, there was almost universal agreement, including in some important international documents, that that was wrong, that was ethically wrong, it was a line that we must never step across, that humans have a right to come into existence with their own unique genetic heritage and other humans have no right to alter them, to design them. Julian uses the term genetic engineering – to make them, to manufacture them. Where we would disagree completely is with the setting up of what can be called human embryo manufacturing plants, that is, you would create human embryos in order to use them to make products that would benefit other people, you would use them for experimentation, for research. And Julian’s right, we could do a great deal of good doing that – but there’s a huge danger in looking only at the good that we do. And what we’re doing there is we’re using human life as a product. We’re transmitting human life with the intention of killing it by using it as a product, and I believe that’s wrong. I think that human embryos have moral status that deserves respect, which means they shouldn’t be treated just as products.
Medical science continues to push at the boundaries of life and death with new drugs and technologies that can extend life or improve health. But these advances come at a cost. And that inevitably raises difficult questions about whether public health systems should pay for such treatments – and, if so, how much. For example, should the NHS fund the new breast cancer drug Kadycla which comes with a £90,000 price tag per patient?
Some countries make these difficult decisions by looking at the cost-effectiveness of new treatments. How much does the new treatment cost and how effective is it compared with existing treatments? Treatments may help patients live longer, or they may improve a patient’s quality of life (or both). Kadycla appears to extend life by about six months.
One mathematical way of combining these elements uses the concept of a Quality-Adjusted Life Year saved, or QALY. As an example, a treatment that extends life for one year but at a “quality” level of half normal it said to save 0.5 QALY. When treatments are assessed this way, health systems can then use a threshold to work out a maximum cost that is affordable. The National Institute for Health and Care Excellence (NICE) uses a threshold of £20,000-£30,000 for each Quality-Adjusted Life Year saved (QALY). This would mean (assuming full quality of life), that the NHS would be prepared to pay £10,000-15,000 for a course of Kadycla.
Many people are suspicious about being manipulated in their emotions, thoughts or behaviour by external influences, may those be drugs or advertising. However, it seems that – unbeknown to most of us – within our own bodies exist a considerable number of foreign entities. These entities can change our psychology to a surprisingly large degree. And they pursue their own interests – which do not necessarily coincide with ours.
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Luke Malone has published an extremely moving, disturbing, and distressing article in Medium, entitled ‘You’re 16. You’re a pedophile. You don’t want to hurt anyone. What do you do now?’ (warning: Malone’s article contains a graphic description of child abuse). The article focuses on ‘Adam’, a young man who, aged 16, was horrified to discover that he was sexually attracted to children. Disturbed by his sexual desires, and desperate to avoid acting on them, he suffered depression and initially used child pornography as an outlet for his feelings. (He subsequently stopped doing this.) Adam describes how he eventually went to see a therapist, who was unsympathetic, inexperienced in this area, and ultimately of little help. It turns out that, despite the fact that paedophilia is recognised as a mental disorder, there are major obstacles to helping people who, like Adam, are desperate to avoid harming children. Malone summarises some of the main problems: Continue reading
by Dominic Wilkinson (@NeonatalEthics)
Lord Falconer’s assisted dying bill is being debated today in the House of Lords. In the past week or two there has discussion in the media of many of the familiar arguments for and against such a proposal. As Roger Crisp noted in yesterday’s post, there have been relatively few new arguments. Supporters of the bill refer to compassion for the terminally ill, the difficulty of adequately relieving suffering, and patients’ right to make fundamental choices about the last stage of their lives. Opponents of the bill express their compassion for the terminally ill and those with disabilities, fear about coercion, and the omnipresent slippery slope.
One concern that has been raised about the assisted dying bill is the fear of abuse in the setting of an overstretched public health system. For example, Penny Pepper, writing in the Guardian notes that “Cuts to social care are monstrous…How would the enactment of the Falconer bill work if brought to our harassed NHS?”
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Is there anything wrong with seriously entertaining this possibility? Not according to the author of a research article published this month in Journal of Religion and Health. In ‘Schizophrenia or possession?’,1 M. Kemal Irmak notes that schizophrenia is a devastating chronic mental condition often characterised by auditory hallucinations. Since it is difficult to make sense of these hallucinations, Irmak invites us ‘to consider the possibility of a demonic world’ (p. 775). Demons, he tells us, are ‘intelligent and unseen creatures that occupy a parallel world to that of mankind’ (p. 775). They have an ‘ability to possess and take over the minds and bodies of humans’ (p. 775), in which case ‘[d]emonic possession can manifest with a range of bizarre behaviors which could be interpreted as a number of different psychotic disorders’ (p. 775). The lessons for schizophrenia that Irmak draws from these observations are worth quoting in full:
As seen above, there exist similarities between the clinical symptoms of schizophrenia and demonic possession. Common symptoms in schizophrenia and demonic possession such as hallucinations and delusions may be a result of the fact that demons in the vicinity of the brain may form the symptoms of schizophrenia. Delusions of schizophrenia such as “My feelings and movements are controlled by others in a certain way” and “They put thoughts in my head that are not mine” may be thoughts that stem from the effects of demons on the brain. In schizophrenia, the hallucination may be an auditory input also derived from demons, and the patient may hear these inputs not audible to the observer. The hallucination in schizophrenia may therefore be an illusion—a false interpretation of a real sensory image formed by demons. This input seems to be construed by the patient as “bad things,” reflecting the operation of the nervous system on the poorly structured sensory input to form an acceptable percept. On the other hand, auditory hallucinations expressed as voices arguing with one another and talking to the patient in the third person may be a result of the presence of more than one demon in the body. (p. 776)
Irmak concludes that ‘it is time for medical professions to consider the possibility of demonic possession in the etiology of schizophrenia’ and that ‘it would be useful for medical professions to work together with faith healers to deﬁne better treatment pathways for schizophrenia’ (p. 776). Continue reading
The newspapers today are full of the horrifying story of three children who were found dead in their family home in South London on Tuesday. The children had all apparently been diagnosed with a severe genetic disorder (spinal muscular atrophy), that was likely to lead to death in early childhood. Their mother has today been charged with their murder.
There are relatively few details available at this stage, and doubtless more will emerge over coming days and months. It would be premature to comment on the specific circumstances of the case (and the family has asked the public and media to refrain from speculation). However, it is likely that as those details do emerge that commentary on the case will take up one of two themes. Some commentators will point to the enormous strain of caring for severely disabled and terminally ill children, and perhaps bemoan the lack of available supportive services. Others (perhaps with disability or with personal experience of caring for the disabled) will react with horror at the idea of a parent killing their child, and reject any attempt to use child disability as a form of excuse for the crime. Continue reading
Imagine that when you woke up this morning, you found yourself lying next to an unconscious stranger. The stranger has a rare life-threatening illness, and unbeknownst to you he was plugged in to your organs during the night. You are now stuck to the stranger. If you disconnect the life support he will die. If, though, you remain connected to him for most of the next year his illness will have recovered, and he can safely ben unplugged. What should you do? Are you obliged to stay attached to the stranger? It might be generous of you to give up your body, and good if you choose to do so, but should we require you to remain connected?
If you’re a young woman, your face is worth between 48-67% more than that of a young man.
That’s the gist of the Judicial College’s Guidelines for the Assessment of General Damages in Personal Injury Cases, 12th Edition (2013) – one of the canonical texts used by lawyers.
For ‘Very Severe Scarring’ ‘in relatively young women (typically teens to early 30s), where the cosmetic effect is very disfiguring and the psychological reaction severe’, the suggested range of damages for pain, suffering and loss of amenity (what lawyers call ‘general damages’) is £39,160 – £78,650. The corresponding figures for males (‘especially in males under 30’) are £24,090 – £53,075.
The editors of the Guidelines are embarrassed by the discrepancy. They point out that it arises from ‘cases that stretch back into the mists of time’, but that it is ‘nonetheless open to serious doubt that gender itself can be a proper or indeed lawful factor in determining the level of general damages.’ The embarrassment is appropriate. Gender in itself should not be relevant. The Guidelines list the relevant factors: they include ‘the subjective impact of the disfigurement upon the claimant and the extent to which it adversely affects the claimant’s social, domestic and work lives’.
Should the Guidelines declare that, as a matter of policy, the law should refuse to distinguish between facial scarring in males and in females? That, one might think, is an appropriate way for the law to declare its gender-blindness: it might help to nudge society (which the law leads, as well as reflects) in the right direction. But that would be wrong: the fact is that, whether we like it or not, facial scarring matters more to women. We should do our best to change the attitudes that make this the case, but it is the case, and in compensating claimants, judges should not pretend that we live in a liberal utopia in which people are not judged (by themselves and others) on the basis of the shape or colour of their face. Similarly, when assessing damages for loss of earnings, the law should not pretend that the legislation which prohibits discrimination on grounds of disability actually works.