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Guest Post

Ethical Issues when modelling brain disorders in non-human primates

22 Sep, 17 | by miriamwood

Guest Post: Carolyn Neuhaus, Ph.D.
Paper: Ethical issues when modelling brain disorders in non-human primates

In early 2016, Nature published a letter from a group of Chinese researchers reporting that they had created rhesus macaques with “autism-like” behaviours. The macaque was bred with a mutation in the MeCP2 gene. Overexpression of MeCP2 is found in 90% of patients with Rett syndrome, a disorder that shares many of its core symptoms with autism spectrum disorders. This would not be newsworthy, except that their macaques’ mutation was also heritable: at least some future offspring inherited the mutation, making it possible to create a sustainable colony of primates with the same mutation. The monkeys they created exhibited typical behaviors of humans with autism: increased stress response, repetitive behaviour, and less social interaction than their wild-type peers. This was interpreted as evidence that the genetically modified monkeys would provide a valuable model to study autism. The authors concluded, “These results indicate the feasibility and reliability of using genetically engineered non-human primates to study brain disorders.” Among those on the list: autism spectrum disorders, Alzheimer’s disease, bipolar disorder, and schizophrenia.

The publication of these results was heralded by some as a great advance in neuroscience.  Leaders of the China Brain Initiative stated, “It is likely that, through more extensive use of macaque monkeys as an animal model, Chinese teams will obtain new insights into the neural mechanisms underlying higher cognitive functions and generate monkey models for brain disorders that could be used for developing new therapeutic treatment.” Walter Koroshetz, Director of the U.S. National Institute of Neurological Disorders and Stroke, has also called out the Chinese efforts to “develop nonhuman primate models of brain disease using the macaque, an old-world primate that may have more relevance for humans [than other animal models of brain disease].” The imperative to understand the brain and brain disorders, and discover new therapies so desperately needed by suffering patients, has been taken by some to justify, if not require, creating primate models of brain disorders.


Revealing recipient details to families of potential organ donors

22 Sep, 17 | by miriamwood

Guest Post: David Shaw & Dale Gardiner
Paper: Increasing organ donation rates by revealing recipient details to families of potential donors

Families often don’t allow their deceased relatives to donate organs, even when the patient was a registered organ donor. Even when the donation process is explained sensitively by specialist nurses, families can focus much more on the potential stress caused by donation than on the potential benefits of donation. In our article we suggest that more emphasis should be placed on the potential benefits to recipients – and that this can be done by revealing information about recipients to families who are considering whether to allow donation to go ahead. This could help to overcome family’s ‘moral distance’ from the potential consequences of their actions.

In the UK, if a person is a registered organ donor, families have no right to ‘overule’ donation, and their agreement is not legally required. But while initial objections can sometimes be overcome, healthcare professionals will not persist with persuading families to agree where there is strong resistance. When a deceased patient was not a registered organ donor, it is up to the family to decide whether donation should go ahead. In both types of case, families are only told that donation could benefit patients in need of organs. We think that this is not enough. Families must be given enough information so they can understand the full consequences of their decision: that several patients might die if donation does not go ahead. To achieve this families should be told basic information about potential recipients.


Does the doctrine of double effect apply to the prescription of barbiturates? Syme vs the Medical Board of Australia

22 Sep, 17 | by miriamwood

Guest Post: Xavier Symons
Paper: Does the doctrine of double effect apply to the prescription of barbiturates? Syme vs the Medical Board of Australia

My recently published article analyses the controversial Victorian Civil and Administrative Tribunal (VCAT) hearing Syme vs The Medical Board of Australia. In that hearing, Dr Rodney Syme, an Australian urologist and euthanasia advocate, was defending his practice of prescribing Nembutal to terminally ill patients. The Medical Board of Australia (MBA) had found that Syme’s behavior posed “a serious risk to persons” and placed a condition on Syme’s license that prevented him from engaging in medical care “that has the primary purpose of ending a person’s life”. Syme appealed the MBA decision, testifying to VCAT that he prescribed the drug with the intention of relieving their existential suffering and not to assist in suicide. Essentially, he argued that the Doctrine of Double Effect (DDE) could be applied to justify his actions.

The aim of my article is to debunk Syme’s claim. I argue that a close scrutiny of his actions reveals that, at the very least, he intended to give patients the option of suicide. Insofar as this is the case, DDE cannot be invoked as a justification.


The ‘Weird’ First Fortnight of the Foetus: Implications for the Abortion Debate

10 Aug, 17 | by miriamwood

Guest Post: William Simkulet
Paper: The Cursed Lamp: The Problem of Spontaneous Abortion

For many people, the moral status of abortion stands or falls whether or not a human fetus is morally comparable to you or I; whether its death is a significant loss.  Many people believe human fetuses have a right to life from conception, and thus conclude that there is good reason to think induced abortion is seriously morally wrong.  Judith Jarvis Thomson challenges this belief, constructing a scenario where she believes it is morally acceptable to end the life of a person because although he has a right to life, his right to life does not give him a right to use your body.  Her example should be familiar:

Violinist:  You wake up in the hospital, surgically attached to a violinist.  Your doctor explains that last night the Society of Music Lovers kidnapped the two of you and performed the surgery.  The violinist has a serious condition that will result in his death soon unless he remains attached to your kidneys for the next 9 months (you alone are biologically compatible).

The violinist has a right to life, and surely you are free to let him remain attached to your body to save his life.  It would be a great kindness for you to do so, but Thomson says that the violinist’s right to life does not give him the right to use your body.  Anti-abortion theories that focus on the moral status of the fetus neglect to show why the fetus’s moral status – its argued for right to life – would give it a right to use the woman’s body.

The violinist case is supposed to be a counterexample to the claim that a right to life gives one a right to your body.  However, it is easy to misread the case as an analogy for pregnancy.  John T. Wilcox, I think, does something like this, and raises a rather important criticism – the violinist example is weird, he contends, while pregnancy is “the opposite of weird.” The thrust of this argument is that we should not trust our intuitions about Violinist, but we should trust our intuitions about pregnancy; and many people have the intuition that human abortion is a serious moral loss because fetuses are persons from conception.

But pregnancy – especially early pregnancy – is weird.  Most of us are not intimately familiar with the nuances of fertilization and fetal development.  If we were, we would recognize that within the first two weeks of pregnancy, the fetus is under constant danger – danger, that parents and anti-abortion theorists alike seem to neglect.  Approximately half of all human fetuses are spontaneously aborted within the first two weeks of pregnancy. During these first two weeks of pregnancy, a fetus’s cells are totipotent, such that each one can separate to form a full human being – creating identical twins, resulting in the loss of one unique person and creating two different “replacement” fetuses.  Furthermore, two or more fetuses can chimera, ceasing to exist and creating a single, distinct organism.


Ethics Committees Should Have Standards in Preparing New Members

8 Aug, 17 | by miriamwood

Guest Post: Danish Zaidi and Jennifer Kesselheim
Paper: Assessment of orientation practices for ethics consultation at Harvard Medical School-affiliated hospitals

Ethics advisory committees (EACs), or clinical ethics committees, fulfill an important role in hospitals, providing ethics consultation, contributing to hospital-wide policies, and educating staff on ethical dimensions of medical practice. Our study built upon a central question: what qualifies one to serve on these sorts of committees? It’s a question with added relevance to us as authors: Danish Zaidi was part of the inaugural class of the Harvard Medical School Master of Bioethics program and Jennifer Kesselheim is an EAC co-chair and the founding director of the Harvard Medical School Master of Medical Sciences (MMSc) in Medical Education program. We studied how EACs recruit and educate members of their committees. In particular, what orientation practices were use in educating new members of EACs and how did members perceive confidence were member in fulfilling their duties on the other end of their “orientation”?


Advances in Neuroscience Strengthen Ethical Opposition to Harmful Experiments on Dogs

2 Aug, 17 | by miriamwood

Guest Post: Jarrod Bailey, Cruelty Free International, London, UK.

Paper: Advances in Neuroscience Imply that Harmful Experiments in Dogs are Unethical

More than 200,000 dogs are used in harmful experiments every year worldwide, in research into human and animal diseases and in the testing of new drugs and agrochemicals. This continues despite significant public opposition to it, and of increasing scientific evidence of its poor human relevance and misleading nature. From a utilitarian perspective, these alter the harm-to-benefit balance of using dogs in experiments. If experiments on dogs cause more suffering than is commonly appreciated, and if they are not delivering the human benefits that are claimed of them, then these experiments must be reconsidered by those who fund, license, and conduct them.

But how do we know how much dogs can suffer, and how much joy they can experience and are thus deprived of in a laboratory? Many would argue that it is simply obvious that dogs have impressive cognitive capabilities, as well as experiencing positive and negative emotions. This is not enough for science, of course, which seems unable or unwilling to accept sentience in nonhumans as it does for humans, based on weight of evidence. For many years, efforts to understand the minds of dogs in more detail have centred on ethological research which, while extremely valuable, does have some associated, widely acknowledged caveats. It can only go so far, especially for those for whom the evidence it produces can perhaps never be sufficient to warrant a change of attitude and behaviour towards dogs.


Pain After Cancer: A New Model for Pain Psychology?

27 Jul, 17 | by bearp

Guest Post by Lauren Heathcote

What if every headache, every slight twinge in your back, was potentially life threatening? What if you couldn’t tell a brain tumour from coffee-withdrawal? These can be constant, niggling worries for many people who have survived cancer, and we think their experiences can tell us something important about pain.

If you have read a Body in Mind blog post over the last few years you will likely have come across the idea that pain is all about meaning. Pain is about perceiving threat and danger to the body. The general idea is that the brain uses different types of information – including from the external and internal world through our senses, and from within brain centres that encode things like emotion and memory – to decide how much danger the body is in. The brain then produces an output based on all this information, the feeling of pain, to reflect that danger. Importantly, how we interpret painful sensations is an integral part of assigning meaning and making sense of those experiences.

So if pain is about threat – if it’s about meaning – an ideal model to study pain would be one where there is little tissue damage but a high level of perceived danger. Scientists have played around with this idea in the lab for a few decades now (like this cool study in adults and this ace study in kids). The trouble is; thanks to our cushty[1] modern ethics system, making lab participants feel like they are in extreme, life-threatening danger is understandably a bit of a no-go.

So what about outside the lab? A little while ago I became interested in the experience of pain following cancer treatment. Pain is not only a common experience during and after cancer treatment, but it is also one of the most common symptoms that leads to an initial cancer diagnosis. Many individuals live with pain for months before receiving a cancer diagnosis, making pain an experience that was ignored for so long but indicative of such grave danger.  It’s hardly surprising, then, that the experience of pain after cancer can be an anxiety-inducing event. Imagine you are given the ‘all clear’ and you are told to go out and live your life despite the near-constant fear that the cancer may return. How do you live within your body from that moment on? How do you judge a true from a false alarm?


Re: Nudges in a Post-truth World 

19 Jul, 17 | by bearp

Guest Post: Nathan Hodson 

In a recent article in the Journal of Medical Ethics, Neil Levy has developed a concept of “nudges to reason,” offering a new tool for those trying to reconcile medical ethics with the application of behavioural psychological research – a practice known as nudging. Very roughly, nudging means adjusting the way choices are presented to the public in order to promote certain decisions.

As Levy notes, some people are concerned that nudges present a threat to autonomy. Attempts at reconciling nudges with ethics, then, are important because nudging in healthcare is here to stay but we need to ensure it is used in ways that respect autonomy (and other moral principles).

The term “nudge” is perhaps a misnomer. To fill out the concept a bit, it commonly denotes the use of behavioural economics and behavioural psychology to the construction of choice architecture through carefully designed trials. But every choice we face, in any context, already comes with a choice architecture: there are endless contextual factors that impact the decisions we make.

When we ask whether nudging is acceptable we are asking whether an arbitrary or random choice architecture is more acceptable than a deliberate choice architecture, or whether an uninformed choice architecture is better than one informed by research.

In fact the permissibility of a nudge derives from whether it is being used in an ethically acceptable way, something that can only be explored on an individual basis. Thaler and Sunstein locate ethical acceptability in promoting the health of the person being nudged (and call this Libertarian Paternalism — i.e. sensible choices are promoted but no option is foreclosed). An alternative approach was proposed by Mitchell: nudges are justified if they maximise future liberty. Either way the nudging itself is not inherently problematic.

Detailing the relevant psychological research, Levy outlines how our responses to new information are influenced by our understanding of the source. Does the source stand to benefit from persuading us? Does the source wish us good or ill? These are classified as Messenger factors in the Behavioural Insights Team’s1 MINDSPACE classification.

Levy goes on to show how sensitivity to these factors makes evolutionary sense and as such constitutes part of our subconscious reasoning. Nudges that promote appropriate sensitivity to the factors, then, do not subvert our rationality; they apply or appeal directly to it.

There is huge scope within Levy’s grouping of nudges for interventions that do not threaten autonomy. For example the “N” in MINDSPACE stands for “norms.” An attuned sensitivity to group norms is adaptive in the same way as are messenger factors. But there is another group of nudges that actively promote autonomy.

The challenges to healthcare and wider society in this purportedly post-truth era demand improved quality of public debate and individual deliberation, and nudges can help. Building on Mitchell’s notion that nudges can be good if they increase future liberty and taking a rich conception of autonomy maximised through reflection and rationality, we could conceive of nudge-based policies which maximise current autonomy.  more…

Guest Post: Withdrawing Life-Prolonging Treatment in the Patient’s Best Interests: The Implications of Briggs

14 Jul, 17 | by miriamwood

Guest Post: Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

Paper:  When ‘Sanctity of Life’ and ‘Self-Determination’ clash

In a recent landmark judgment in the Court of Protection (Briggs v Briggs [2016] EWCOP 53), a judge authorised withdrawal of life-prolonging treatment from a minimally conscious patient with potential for further recovery.  Our article in the Journal of Medical Ethics addresses the implications of this judgment, highlighting its potential to strengthen compliance with the Mental Capacity Act 2005, and the delivery of person-centred care.

How this will work in practice is another question.

We have supported families (CK and JK) and represented patients (JC) in a series of cases – several of which have reached court – in which families sought treatment withdrawal and doctors refused.  We know many families who believe that their brain-injured relative would not want to receive on-going life-prolonging interventions. It usually takes years for families to come to this view and even longer to communicate it to doctors. Some health care professionals can be dismissive – or even hostile – when families speak up.   Even when doctors acknowledge that a patient will never regain consciousness, some have ethical objections to withdrawing treatment from a clinically stable patient.  It feels, they say, like ‘euthanasia’.


No Pain, All Gain: The Case for Farming Organs in Brainless Humans

10 Jun, 17 | by Iain Brassington

Guest post by Ruth Stirton, University of Sussex (@RuthStirton) and David Lawrence, Newcastle University (@Biojammer)

It is widely acknowledged that there is a nationwide shortage of organs for transplantation purposes.  In 2016, 400 people died whilst on the organ waiting list.  Asking for donors is not working fast enough.  We should explore all avenues to alleviate this problem, which must include considering options that appear distasteful.  As the world gets safer, and fewer young people die in circumstances conducive to the donation of their organs, there is only so much that increased efficiency in collection (through improved procedures and storage) can do to increase the number of human organs available for transplantation. Xenotransplantation – the transplantation of animal organs into humans – gives us the possibility of saving lives that we would certainly lose otherwise.

There are major scientific hurdles in the way of transplanting whole animal organs into humans, including significant potential problems with incompatibility and consequent rejection.  There is, however, useful similarity between human and pig cells, which means that using pigs as the source of organs is the most likely to be viable.  Assuming, for the moment, that we can solve the scientific challenges with doing so, the bigger issue is the question of whether we should engage in xenotransplantation.

A significant challenge to this practice is that it is probably unethical to use an animal in this way for the benefit of humans. more…

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