Julian Savulescu’s Posts

Cross Post: Speaking with: Julian Savulescu on the ethics of genetic modification in humans

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Could genetic engineering one day allow parents to have designer babies?
Tatiana Vdb/flickr, CC BY

William Isdale, University of Melbourne

What if humans are genetically unfit to overcome challenges like climate change and the growing inequality that looks set to define our future?

Julian Savulescu, visiting professor at Monash University and Uehiro professor of Practical Ethics at Oxford University, argues that modifying the biological traits of humans should be part of the solution to secure a safe and desirable future.

The University of Melbourne’s William Isdale spoke to Julian Savulescu about what aspects of humanity could be altered by genetic modifications and why it might one day actually be considered unethical to withhold genetic enhancements that could have an overwhelmingly positive effect on a child’s life. Continue reading

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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Video Series: Professor Julian Savulescu argues in favour of an experimental treatment for Charlie Gard

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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Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment. Continue reading

Cross Post: Five ways the meat on your plate is killing the planet

Cross-posted from The Conversation

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shutterstock

Francis Vergunst, Université de Montréal and Julian Savulescu, University of Oxford

When we hear about the horrors of industrial livestock farming – the pollution, the waste, the miserable lives of billions of animals – it is hard not to feel a twinge of guilt and conclude that we should eat less meat. The Conversation

Yet most of us probably won’t. Instead, we will mumble something about meat being tasty, that “everyone” eats it, and that we only buy “grass fed” beef.

Over the next year, more than 50 billion land animals will be raised and slaughtered for food around the world. Most of them will be reared in conditions that cause them to suffer unnecessarily while also harming people and the environment in significant ways.

This raises serious ethical problems. We’ve compiled a list of arguments against eating meat to help you decide for yourself what to put on your plate.

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

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.

His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.

“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.

Ethics of Limitation of Life Prolonging Medical Treatment

In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:

  1. the patient autonomously refuses it. (autonomy)
  2. continued life is no longer in the patient’s interests (best interests)
  3. the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)

Sometimes treatment is withheld or withdrawn because it is “futile.” Dominic Wilkinson and I have argued that although futility is often said to refer to “best interests”, it is more appropriately interpreted as a justice justification for limitation, that is, criterion 3. The reason we have argued this is that the best interests justification (2), requires that doctors establish that life is no longer worth living. That is, that the person would be better off dead. This is a very difficult standard to establish, even if the concept of a life not worth living is coherent. Justice does not require that we establish where the line of of a life worth living is. It only requires a comparative judgement – that compared to other uses of a limited medical resource, this use is not justified. The NHS has thresholds for cost-effectiveness that it routinely employs. A justice justification for limiting life prolonging medical treatment only requires an extension of this every day approach. For example, a treatment which has a 1/10,000 of prolonging a person’s life is a lower priority than a treatment which has a 50% chance of extending life. We need not say that the first treatment is “futile” or confers no benefit to the patient. We need only say that it is very poor value for money.

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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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Cross Post: We have a moral obligation to allow drug analysis at music festivals

This article was originally published in The Conversation

Written by Julian Savulescu Sir Louis Matheson Distinguishing Visiting Professor at Monash University,

Uehiro Professor of Practical Ethics, University of Oxford

Connor Rochford Medical Student, Monash University

Daniel D’Hotman Medical Student, Monash University


Drug analysis would be a safe, ethical and cost-effective way to reduce harm to young people. Shutterstock

At the Stereosonic festival last year, Sylvia Choi died after consuming a contaminated ecstasy tablet. Unfortunately Sylvia’s narrative is all too familiar – a bright future extinguished at a music festival that will be remembered for all the wrong reasons.

This summer, many young people will also choose to consume various illegal substances in pursuit of a good time. Regardless of their personal choice to break the law, most would agree that they should not have to die for it. Continue reading

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