Pushethics: How to get a lung for your child
By Julian Savulescu & Brian D. Earp
[updated version]
Sarah Murnaghan is a 10-year-old from Pennsylvania. Suffering from cystic fibrosis, she was likely to die without a lung transplant. Her situation was deteriorating. But because of a rule that says that children under the age of 12 have the lowest priority for adult donor lungs, Sarah would have to wait for another child’s lungs to become available, a much rarer occurrence.
Sarah’s parents sprang into action. They got the attention of members of congress and the media. They shared Sarah’s story on social networking sites, showing pictures of their daughter in the hospital bed. They said that the “Under 12” rule was discriminatory against children, and got a federal judge to agree. So, with the help of a court order temporarily preventing the enforcement of the Under 12 rule, Sarah got a second chance at life. An adult lung match became available, and Sarah is now recovering from transplant surgery.
It’s a story with a happy ending—depending upon how you tell it. Certainly the news is good for Sarah. Yet as Sarah’s mother acknowledged in a post on Facebook, “We … know our good news is another family’s tragedy.”
But who are those families? What are their stories? What are the names of those who will die—or who have already died—without a lung transplant of their own?
What this case illustrates is something we might call “pushethics” – a way of pushing one’s own story, or that of one’s family member, into the moral spotlight. Since ordinary human beings—from news anchors to congressmen to federal judges—are more likely to feel empathy for known individuals with compelling narratives of suffering, they can become motivated to bend the rules in favor of those specific individuals whose stories best capture their attention.
Ethics and the Limits of the Randomized Controlled Trial: Time to Enhance Access to Novel Therapies in Lethal Diseases?
Parts of this blog are drawn from ‘Improving access to medicines: empowering patients in the quest to improve treatment for rare lethal diseases’, a forthcoming paper in the Journal of Medical Ethics
Jenn McNary witnesses the miracles that modern medicine can produce every day when she sees her son Max, once increasingly reliant on a wheelchair due to his Duchenne muscular dystrophy, now able to walk, run and jump, the progression of his deadly disease apparently halted due to his enrolment in a clinical trial of a new drug, Eteplirsen.
Tragically, she also witnesses the suffering of her son Austin, who has the same genetic condition, denied the drug as his disease progresses and left no longer able to leave his wheelchair unaided. Like most with Duchenne muscular dystrophy, he is expected to die in his early twenties.
Eteplirsen works by rewriting some of the genetic code that is linked to the disease. If Max’s improvement is repeated in other patients in the trial who are receiving the drug and not the placebo, it is likely that in a few years this treatment will be revolutionizing the prognosis for Duchenne sufferers and offering hope to many of the 1 in 3600 boys who are affected by the disease.
In the meantime, patients like Austin are denied treatment, on the grounds that the drugs have not been tested- in order to protect him from unknown side effects and complications, and to test its efficacy scientifically. Yet the alternative for Austin is continuing degenerative disease, and in a few years, death.
Les Halpin, founder of Access to Medicine, and himself a motor neuron disease sufferer has argued that for those with life threatening and rare illnesses, current drug approval procedures do not work. He argues in our forthcoming paper that “for such individuals, the “risk-return ratio” is different compared to patients with more benign conditions and drug regulations should be adapted to allow such people the opportunity to try out new combinations of drugs”. He has argued for greater use of new media to track patient progress, and cites the use of the website ‘Patients Like Me’ by MND patients to track their progress on lithium treatment.
Male Circumcision and the Enhancement Debate: Harm Reduction, Not Prohibition
This blog is a brief response to ‘Out of Step: Fatal Flaws in the Latest AAP Policy Report on Neonatal Circumcision’ by Steven Svoboda and Robert Van Howe, and the AAP Task Force on Circumcision’s Response. This is part of a special issue summarised by Brian Earp.
Around one third of men worldwide are circumcised. It is probably the most commonly performed surgical procedure. Circumcision is also one of the oldest forms of attempted human enhancement. It is and has been done for religious, social, aesthetic and health reasons.
Circumcision has a variety of benefits and risks, many of which are discussed in this issue. There is some dispute about the magnitude and likelihood of these benefits and risks. Some argue that the risks outweigh the benefits and circumcision should not be performed on children who are not competent to make their own decisions.
If it were true that the risks of circumcision clearly outweighed the benefits, great harm has been done and is being done globally through this procedure. Around one third of men have been harmed. This is an extraordinary public health injury. Presumably, some would be entitled to compensation.
The fact that few people think that there is not such a bad situation affecting millions of men indicates that most people implicitly believe that circumcision is not a significant harm, if a harm at all. (This is an example of the kind of argument called modus tollens. If p, then q. Not-q, therefore not-p.)
It is reasonable to conclude either that:
1) It is not clear from existing evidence whether the risks of properly performed circumcision outweigh the benefits, or vice versa.
Or
2) If circumcision is against the interests of an infant, it is only mildly so.
In general, people should make their own decisions about body modification and human enhancement when this is possible. Such an approach speaks in favour of waiting until a child is adult to make his or her own decision about circumcision. And procedures which are not clearly in a child’s interests should not be performed on that child. However, religious and other social exclusion may make delay in circumcision psychologically harmful.
It would be a mistake to ban circumcision, given its importance to many people. A dangerous “black market” would be created. As with other forms of potentially risky human enhancement, the best policy is one of harm reduction, not prohibition. Non-medical circumcision should be discouraged, but not prohibited(for further discussion see ‘Rational Non-Interventional Paternalism: Why Doctors Ought to Make Judgements of What Is Best for Their Patients’and ‘Liberal Rationalism and Medical Decision-Making’).
If The Jury System Is The Best Option, Can We Make it Better?
By Julian Savulescu and Anders Sandberg
Vicky Pryce, wife of disgraced ex-MP Chris Huhne, is back in court this week after the jury trying her case was discharged last week having failed to reach a verdict on her charges of perverting the course of justice. In 2003, Pryce accepted Huhne’s speeding points, but is claiming a defence of marital coercion. In 10 questions to the judge, the first jury showed an alarming and deep lack of understanding. Questions included:
“Can a juror come to a verdict based on a reason that was not presented in court and has no facts or evidence to support it?”
They also showed the jury had apparently forgotten key concepts which were explained during the trial:
“Does this defence require violence or physical threats?”
“Can you define what is reasonable doubt?”
Following the jury’s discharge, the judge said the jury showed “absolutely fundamental deficits in understanding”, adding that he had never seen this in 30 years of presiding over criminal trials. In Pryce’s trial, the questions the jury asked after several days of deliberations raised alarm bells, but in another trial where a verdict was reached, we would never know what the standard of jury understanding or deliberation had been. Yet juries are asked to decide (in some countries) on matters of life or death.
The Pryce case may have been unusual, but in any trial, and particularly in complex fraud cases, juries are asked to juggle and compute vast amounts of information, and to retain it throughout the trial in order to make an informed decision at the end. We have argued in “The Memory of Jurors: Enhancing Trial Performance” and “Cognitive Enhancement in Courts” with Walter Sinnott-Armstrong, that cognitive enhancement, particularly memory enhancers should be made available to jurors. If this had been available in the Pryce case, would the jury have spent more time discussing the decision at hand, and less on (mis-)remembering the judge’s instructions on reasonable doubt or the definition of coercion? If we ask people to take on a civic duty we should offer them all the tools we have available to assist them in its completion.
“The Best Interests of the Family”: Parents v Baby?
There is much that is good to be said about Dominic Wilkinson’s new book Death or Disability? The ‘Carmentis Machine’ and decision-making for critically ill children.
My favourite part of the book is how Dominic confronts head on the issue of the best interests of the family in relation to care, and withdrawal of medical treatment, in newborns.
This is one of the most neglected areas of bioethics.
On the one hand, there is a rhetoric that goes we are all social beings, we are socially connected, not atomistic individuals, the community matters, etc etc The usual communitarian mantra.
Then there is the alleged overriding legal and medical ethical principle of the best interests of the patient, which is the newborn infant in the case of neonatal medicine. The sole basis of the provision of medical treatment is meant to be to promote the best interests of the patient, and medicine should never be used to harm the patient, etc etc. The usual medical ethics and law mantra.
And then there is real life. The interests of the parents, siblings, other relatives, friends, society etc can all diverge from the interests of the patient, even a newborn infant. How are these to be weighed? The hard edged reality is that the interests of families and especially parents do play a role in clinical decision making, and even in cases to withdraw life-prolonging medical treatment. (For example, in one survey 90% of American intensivists believed that family interests should be included in decisions for incompetent patients. )
In ‘Death or Disability?’, Dominic reaches several striking conclusions. We should certainly give some weight to the interests of the family for decisions about children. This is most likely to sway our decisions in relatively borderline cases, where the net benefit or harm to the child is small. But he also argues that the amount of weight will vary depending on the age of the child, and on the availability of resources. We should give greater weight to the wishes of parents for newborn infants than for an older child. And we should give greater weight again in societies with few resources, where the burden of caregiving is going to fall heavily on families, and where health resources are seriously limited.
It is time for an honest, open and rational approach to these kinds of dilemmas. Dominic does just that.
Yet Another Reason to Legalise Doping in Sport: Organised Crime
Unsurprisingly, the Australian Crime Commission has found widespread use of performance enhancing drugs in sport in Australia and the involvement of organized crime in its distribution.
I have given many arguments for why it would be better for athletes, spectators and sport to liberalise laws currently banning performance enhancing drugs. I have also argued that they are likely to be involved in all sports – football, baseball, rugby, soccer, and so on, and not merely in athletics and cycling.
The Australian Crime Commission report suggests another reason to legalise drugs in sport – that would be the most effective way of reducing the involvement of organized crime in the doping market. As experience with recreational drugs has shown, bans inevitably fail, harm the user and invite crime. The way to put drug lords out of business is to legalise the substance.
When prostitution, alcohol, abortion or recreational drugs are banned, organized crime moves in to deliver the desired product or service. The best to deal with these issues is not through some fanatical moralistic war but through legalization, oversight, regulation, monitoring and harm reduction.
When will we learn?
Whom Should We Refuse to Treat? Pregnant Rape Victims? Surrogates?
By Lachlan de Crespigny and Julian Savulescu
An emergency centre doctor working in Germany has claimed 2 nearby catholic hospitals refused to accept a rape victim who needed treatment, in case she was pregnant . This was allegedly in line with their ethics committee’s policy to refuse to examine sexual assault victims in an effort to avoid future treatments such as the morning after pill coming into conflict with the hospital’s catholic ethos. The hospitals claim this was a misunderstanding and await an internal inquiry.
The Catholic Church does not support abortion and includes the morning after pill as an abortifacient. It is in violation of Catholic (ethical) standards. The doctor making the claims says that Cologne’s Cardinal Meisner had been consulted.
The Catholic Church insists life must be protected with the utmost care from the moment of conception. From the first moment of his or her existence, a human being must be recognized as having the rights of a person. But in this case, they did not only deny the rape victim access to legal contraceptives, they refused to treat or examine her in any way for any of the resulting injuries of the rape. They did not treat her in her hour of need as a person who deserved the utmost care.
Back to the Future: The Ethics of Cloning Neanderthals and Creating Genetically Modified Animals
“George Church, a genetics professor of Harvard School of Medicine, said that the process was possible and that far from being brutal and primitive, Neanderthals were intelligent beings.
They are believed to be one of the ancestors of modern man and became extinct 33,000 years ago. He added that altering the human genome could also provide the answers to curing diseases such as cancer and HIV, and hold the key to living to 120.
He told Der Spiegel, the German magazine: “I have already managed to attract enough DNA from fossil bones to reconstruct the DNA of the human species largely extinct. Now I need an adventurous female human.”
The professor claims that he could introduce parts of the Neanderthal genome to human stem cells and clone them to create a foetus that could then be implanted in a woman.”
From The Telegraph
This would be illegal in the UK and many other parts of the world. But is it morally wrong?
Armstrong Confesses: What Now?
On the eve of his confession, Armstrong is apparently ruined. The International Cycling Union (UCI) has stripped Lance Armstrong of his titles. Sponsors and Tour organisers want millions of dollars returned. UCI president Pat McQuaid said, “Lance Armstrong has no place in cycling. He deserves to be forgotten.”
But doping will always be present in sport. A zero-tolerance approach will always fail. But so too will any policy which attempts to restrict access to performance enhancing drugs and interventions in competitive sport. The question is what kind and how many failures will there be. We should choose the policy which best promotes the values of health, spectator interest, enforceability, fair competition and human excellence. That is a policy of regulated access to performance enhancing drugs.
The zero tolerance ban on drugs in sport is an example of the spectacular victory of ideology, wishful thinking, moralism and naivity over ethics and common sense. Human beings have limitations. Lance Armstrong is no god, but he is also no devil.
We should change the rules, and take Armstrong off the bonfire. There will, after all, be more like him
For a more detailed discussion, see this (draft) paper
An opinion piece on Armstrong is forthcoming in this Saturday’s Age
Persistent Vegetative State and Futility: Should Communication by fMRI Change the Law?
Earlier this month, I discussed Adrian Owen’s research using fMRI scanners to communicate with patients who appeared to be in a Persistent Vegetative State (PVS) . By interpreting brain activity in Canadian PVS and minimally conscious patients, the researchers claim that patients can not only answer questions, but even lay down new memories.
The question of how this new research will affect patients diagnosed with PVS or minimally conscious patients is already being tested in court. Yesterday, the Vancouver Sun reported on the case of Kenny Ng, a minimally conscious patient following a major car crash 7 years ago. Mr. Ng’s wife, Lora, wishes to withdraw hydration and nutrition. According to her lawyers, Doctors advised this course of action shortly after his car accident, but, hoping for an improvement, Mrs Ng had initially refused. After 7 years with no outward signs of improvement, Mrs Ng has asked for nutrition and hydration to be removed, ending his life. However, Mr. Ng’s parents and siblings argue that Owen’s research is “exactly what Kenny has been waiting for over the last seven years”, and that he should be kept alive so he can be assessed for inclusion in Owen’s trials.
If the decision is made in favour of the family, as Thaddeus Pope highlights, it will represent a major change to previous US and Canadian case law.
Owen has made a major scientific breakthrough. However, it is not clear that the discovery of consciousness means that the treatment should not be withdrawn. Paradoxically, the discovery of consciousness in very severely brain-damaged patients may provide more reason to let them die. Although functional neuroimaging is likely to play an increasing role in the assessment of patients in a vegetative state, caution is needed in the interpretation of neuroimaging findings.
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