Julian Savulescu

Burke and Wills, Bowen and Gard: The English Courts, Best Interests and Justice

The Case of Donald Wills

Donald Wills is a self-made man. He is billionaire British banker who has taken an interest in technology. He believes the Singularity is near and wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.

Donald develops a rare condition where the mitochondria in all his cells stop working. The mitochondria are power packs for every cell. Donald’s muscles stop working and he is admitted to a famous London hospital and has to be put on a breathing machine. His brain is affected- he suffers fits which need to be controlled by medication. There is no known cure and he is going downhill.

Doctors call in his wife and explain his dismal prognosis. “It is,” they say, “in his best interests to stop this burdensome treatment in intensive care. He will never regain normal brain function but he is conscious at times and feels pain. He should be allowed to die with dignity.” After all, Donald is 75.

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Revised Press Statement: Gard Legal Decision Questionable on Secular Ethical Grounds

Julian Savulescu and Peter Singer

Charlie Gard should have been allowed to go to US for experimental treatment back in April (or better January when it was first considered) because there was some possibility of him having a life worth living after treatment. That possibility may have been slim, but it does not appear (to us) to have been zero. The rational strategy was to give a trial of treatment, say 3 months, and agree with family to withdraw ventilation if there was no improvement. If this had been done, we would now have some information on whether there is any prospect of improvement..

The critical quote in the judgment of Justice Francis in the High Court back in April is from the independent US expert in nucleoside replacement therapy, Dr I:

“He said that he thought that the treatment, if administered, was unlikely to be of any benefit to Charlie’s brain. He described the probability as low, but not zero.”

Dr I said that if Charlie were his patient, he would push for a trial of treatment.

Is 3 months of suffering associated with intensive care worth taking for, say, a 1/10 000 of improvement? This is a value judgement about which there is reasonable disagreement. Sadly, Charlie has experienced the pains and discomforts of intensive care for more than six months, now without any treatment with any prospect of improving his condition.

The state should not have to pay for expensive experimental treatment with low prospect of success but Charlie’s parents have raised the funds. Charlie should have been allowed to go straight away (and saved hundreds of thousands of pounds of scarce British taxpayer funds which have been used to provide months of intensive care) provided a reasonable physician would treat him in the US. Dr I appeared to be a reasonable and responsible physician.

This is not a religious or right to life argument, or an argument based on compassion. It’s a secular ethical argument about the extreme complexity of judging someone’s life to be not worth living, or judging the prospects of having a life worth living to be not worth taking. The courts have deferred to one group of doctors who are experts in the facts, but they are not experts in the ethics.

More than six months have passed since experimental therapy was first considered. We don’t know how bad Charlie’s brain damage is now. Whether experimental therapy is still warranted depends on whether there remains any prospect of any meaningful life, and how that should be balanced against further intensive care. Perhaps the moment has passed.

Professor Julian Savulescu
Uehiro Chair in Practical Ethics
University of Oxford

Visiting Professorial Fellow
Murdoch Childrens Research Institute

Peter Singer, AC
Ira W. DeCamp Professor of Bioethics
University Center for Human Values
Princeton University
&
Laureate Professor, 
School of Historical and Philosophical Studies,
University of Melbourne

Charlie Gard Bibliography

Article
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31204-7/abstract

Blogs

Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The Moral of the Case of Charlie Gard: Give Dying Patients Experimental Treatment … Early

The tragic case of Charlie Gard has captured the imagination of social media, the Pope and President Trump. All of Charlie’s legal options appear to have been exhausted so, despite the tsunami of opinion, it looks like treatment will be withdrawn, barring some act of God or other authority.

I argued back in April  and then in May that it would be reasonable to give Charlie a trial of experimental treatment for a fixed period, say 6 months. The treatment was not going to make him worse and there was a non-zero possibility of some improvement. At the end of 6 months, his progress could have been reviewed and a decision then made to withdraw treatment if no significant progress had been made. I argued that we can’t be certain that his life is not worth living and we can’t be certain treatment will lead to zero improvement. I argued that the costs – 6 months of sedation and analgesia, with limited amounts of suffering associated with medical procedures, was arguably worth taking. That course was not taken.

Worst of All Possible Worlds

Charlie was born in September 2016. He was admitted to hospital in October. By January 2017, his mother had identified an experimental treatment (nucleoside replacement therapy) available in the US.

By April 2017, the Gards had crowd-sourced £1.2million to take Charlie to the US for experimental therapy. However, a judge ruled life is not in his best interests. He must die. Numerous appeals were lodged, and lost, all the way up to the European Court of Human Rights. Now the Pope and President Trump have weighed in.

It is now over 6 months since Connie Yates , Charlie’s mother, identified and petitioned for an experimental treatment. During the whole of that time, Charlie has been ventilated in intensive care, receiving no therapy offering any prospect of improvement. If treatment had been started back in January, immediately, we would now have evidence presentable to the family, courts, media and doctors of whether it was yielding any improvement, or not.

Unless the treatment itself would have serious side-effects, or was expensive, there is no downside to it being provided, especially when Charlie is being kept alive anyway. Since the parents had raised funds to provide it themselves, there is no justice or resource allocation issue.

Not providing the experimental treatment at the outset is the very worst situation for everyone:

  1. Charlie has been kept alive since January, suffering the alleged harms of intensive care, without receiving an intervention that might lead to an improvement.
  2. His parents have had to watch their child being kept alive, without receiving the treatment they hope will have some effect.
  3. Doctors have had to keep alive a child for 6 months whom they believe is suffering and should die with dignity.
  4. Courts and the family have been denied real time real life information about whether the intervention does have any effect. They have been forced to make non-evidence based decisions.

The reasonable course of action, given the time taken by the court process, would have been to immediately start nucleoside replacement therapy at the parents’ cost (if justice precludes stricken NHS funds being used for it), while petitions to court were made to withdraw active treatment. That would have meant we would have more information about what 6 months of therapy might be able to achieve, and Charlie would have been given his fair go. It would be a better position to be in for all concerned.

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The Tale of the Ethical Neonatologist – And Why There Shouldn’t Be a Legal Right of Conscientious Objection

Doctors have values. These are sometimes described as their conscience. Those values can conflict with what has evolved to be medical practice. Where that practice is consistent with principles, concept and norms of medical ethics, their values should not compromise patient care. The place for doctors to express their values and seek to revise the practice of medicine is at the level of policy and law, not at the bedside. Because conscientious objection can compromise patient care, there should be no legal right to conscientious objection to medical practice that is consistent with medical ethics. Personal values (“conscience”) can be accommodated by employers under standard labour law as occurs in Sweden and Finland, or candidates selected for medical specialties who have values consistent with ethical medicine, or new professions developed to provide those services.

Doctors may have very defensible values. But just because their values are reasonable does not imply they should be accommodated by medicine. Consider the Conscientious Neonatologist.

The Conscientious Neonatologist

Peter is a thoughtful, reflective specialist caring for premature babies in intensive care. He is a vegetarian for 20 years. He became deeply concerned about the welfare of animals during his university years. He believes in “animal liberation”. Neither he nor his family consume meat or use animal products for clothing.

In his job, he must prescribe “surfactant” – a substance to help the lungs of premature babies function better. The standard, and most effective form is derived from the lungs of pigs. However there is a new artificial form. He considers this a more “ethical” product and considers using it in his medical practice. However, it is not currently used in the newborn intensive care unit because it is more expensive than standard treatment, and there is not clear evidence about its effectiveness.

Peter conscientiously objects to the use of animals in medicine and medical research. How should his personal values influence his professional practice?

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Abortion Should Be Decriminalised

Abortion remains a crime in Queensland and NSW in Australia. Queensland Parliament has just decided against decriminalising abortion. However, laws are obsolete and unclear, dating back over 100 years. Around 100,000 abortions are performed around Australia every year. In practice, early abortion is available on demand.

Abortion should be decriminalised. Early abortion should be freely and easily available on request. Late abortion should be freely and easily available at least for those who have a valid justification: significant fetal abnormality, threat to woman’s health or serious social reason, for example child pregnancy or rape. Family planning, including safe, free and open abortion services, is an essential part of a civilized society.

Failure to regulate abortion properly results in women being denied safe, effective abortion services, affecting their mental health and social welfare, as well as those of their family and society. It is stigmatising to women and health professionals to allow abortion to occur, while retaining it as a criminal offence. It is also moral hypocrisy.

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Should Russian athletes really be banned from competing in the Rio Olympics?

Julian Savulescu

Originally posted in The Conversation 

The audience vote is a resounding yes, all Russian track and field athletes should be banned from competing. But is the International Olympic Committee (IOC) justified in giving individual sports federations the right to decide whether athletes can participate in Rio 2016?

In the run-up to the IOC’s decision, anti-doping leaders from 14 countries signed an open letter demanding the Russians’ exclusion. A petition calling for the whole team to be banned was closing in on its aim of 10,000 signatures, while another arguing against a blanket ban had just managed eight.

The IOC decided to face the mob and take a more nuanced approach; it will allow each sporting federation to decide whether the evidence is sufficient to ban athletes in their discipline. Tennis players, who are regularly tested around the world, are in the clear, for instance, with cyclists set to follow.

But athletes in track and field are banned as a group, although individuals may compete as neutral athletes. Is this kind of “collective responsibility” – or “collective punishment” as Mikhail Gorbachev described it – fair?

Standards of evidence

There’s a genuine dilemma here and the situation is not nearly as clear everyone appears to think – and as the World Anti-Doping Agency (WADA) pretends.

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The Unfairness of Unattractiveness

In the job market being attractive is advantageous. According to economist Daniel Hamermesh, an attractive man can earn, over a life time, $230,000 more than an unattractive one[1]. Attractive solicitors raise more money for charities[2].  Very attractive individuals are less likely to engage in criminal activities, whereas unattractive ones have higher propensity for crime[3]. Attractive criminals are punished less severely than unattractive ones[4].

Both children and adults judge attractive people to be more helpful, more intelligent, and more friendly than their unattractive counterparts[5].

Cute infants elicit stronger motivation for care-taking than less cute ones[6]. Moreover, cute infants are rated as most adoptable[7].

Adults have higher expectations of attractive kids compared to non attractive ones[8] and mothers of attractive infants tend to be more affectionate, playful, and attentive when interacting with their children than mothers of less attractive infants[9]. Teachers expect better performances from attractive students[10]. Transgressions of unattractive children are judged more negatively than transgressions of attractive ones[11].

Being attractive is also an advantage in romantic relationships[12] as there is a positive correlation  between physical attractiveness and dating [13][14].

One response to unfairness is to get people to stop discriminating unfairly. This might work for some domains, such as employment where interviews could be conducted blind. But it won’t be possible to counteract all the potential downsides.

We can’t require people to like or fall in love with people they find unattractive. There are at least two possible responses:

  1. Assist people to find attractive what they currently find unattractive
  2. Assist people to be more attractive to those who currently find them unattractive

Both of these are reasonable solutions. The second is cosmetic enhancement.

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Organ Mules

Julian Savulescu

While politicians wring their hands about sensible solutions to the organ shortage, scientists are progressing with genetic manipulations that may see human organs grown in pigs.

US scientists are creating novel life forms: “human pig chimeras”. These are a blend of human and pig characteristics. They are like mules who will provide organs to us. A mule is the offspring of a male donkey (jack) and a female horse (mare). Horses and donkeys are different species, with different numbers of chromosomes but they can breed together.

In this case, they take a skin cell from a person and turn it back in time to make stem cells capable of producing any cell or tissue in the body, “induced pluripotent stem cells.” They then inject this into a pig embryo. This makes a pig human chimera.

However they do a modification to the pig embryo first. They use gene editing, or CRISPR, to knock out the pig’s genes which produce an organ, say the pancreas. The human stem cells for the pancreas then make an almost entirely human pancreas in the pig human chimera. It functions like an organ mule. (The blood vessels are still porcine.)

In this way, your skin cell could grow a new liver, heart, pancreas, or lung.

This is a technique with wider possibilities: other US teams are working on a chimera –based treatment, this time for Parkinson’s disease which will use chimeras to create human neurones.

CRISPR is also credited with enhancing the safety of this technique, with the BBC reporting  that a Harvard team were able to use the new and revolutionary technique to remove copies of a pig retrovirus.

Safety is always a major concern when science crosses new boundaries. But even if a sufficient guarantee of safety could be reached, are there ethical problems?

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Love by design: when science meets sex, lust, attraction and attachment

A version of this post was originally published in the Conversation 

You are on holiday with your partner of several years. Your relationship is going pretty well, but you wonder if it could be better. It’s Valentine’s Day and you find a bottle on the beach. You rub it. A love genie appears. He (or she) will grant you three special Valentine wishes. Here are some of your choices:

  • to have more or less sexual desire (lust);
  • to remain always as “in love” as you were when you first fell in love (romantic attraction);
  • to be more or less bonded to your partner emotionally (attachment);
  • to be (happily) monogamous or polygamous.

What would you choose? What should you choose? What would your partner choose? Would you choose together, if you could? What would you choose for your partner?

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Shame on Sharapova? Time to Rethink the Banned List

Professor Julian Savulescu further discusses this subject at The Conversation

Maria Sharapova has been caught taking the banned performance enhancing drug Mildonium (Mildronate). It was added to the ever growing list of banned substances by WADA in January 2016. She claims to have not read the information sent via email informing athletes of the change of rules and says that she had been taking the drug since 2006 for a magnesium deficiency, an irregular EKG, and her family’s history of diabetes. Mildronate is marketed by the company as a performance enhancer (alongside other uses) and is one of Latvia’s biggest medical exports, accounting for up to 0.7% of its total exports.

Should we feel sorry for her?

Every professional athlete nowadays knows:

  1. Strict liability obtains – that is, they are responsible for everything they put into their bodies. Ignorance is no excuse.
  2. If you are taking any potentially, even vaguely performance enhancing substance you have to watch the WADA banned list like a hawk. It is added to on a regular basis. Indeed, substances may not even be specifically named but fall under a generic category of effect, such as accelerating tissue healing.
  3. If you are taking a banned substance for medical reasons, you need to get a therapeutic use exemption. These are very common: there were at least 550 in cycling from 2008-2014. For example, a cyclist with a diagnosis of asthma can take the beta stimulant, salbutamol. In 2011, 8% of baseballers had a diagnosis attention deficit disorder (and so are allowed to take ritalin, related to amphetamine). Of course, the distinction between health and disease is fuzzy, but that is another story. It is very possible that Sharapova would have been granted a therapeutic use exemption, if she had applied.

Sharapova is a professional. Even if her medical need for what is widely advertised as a performance enhancer is justified, she should have known how to handle the administrative burden around it. Strict liability obtains. She broke the rules and will face the consequences.

The more interesting question is: why was Mildonium placed on the banned list?

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