Julian Savulescu

Four Lessons from the Covert Separation and Study of Triplets

Written by Julian Savulescu

Today, the Journal of the American Medical Association published an article entitled “Three Identical Strangers and The Twinning Reaction— Clarifying History and Lessons for Today From Peter Neubauer’s Twins Study” written by Leon Hoffman and Lois Oppenheim.  It provides background to a documentary, Three Identical Strangers, which gained a lot of attention earlier in the year into “the lives of Edward Galland, David Kellman, and Robert Shafran, triplet brothers who stumbled upon each other in their college years and enjoyed a brief period of celebrity before emotionally confronting the implications of their separation.” One triplet ultimately committed suicide.

The triplets were part of a covert research study by child psychiatrist Peter Neubauer who followed them up for many years to study gene-environment interactions in triplets separated at birth. The article alleges that Neuberger was wrongly blamed by the triplets and film makers for their separation at birth. The authors argue it was “Viola Bernard, then a prominent child psychiatrist from Columbia University and consultant to a now-defunct adoption agency” who was responsible for their separation because she “believed that children born of the same pregnancy and placed for adoption would fare better if they were raised by separate families.” The authors review some evidence from the child development literature at the time that supported the idea that twins or triplets would fare better if adopted, experiencing less sibling rivalry and having greater access to parental resources.

Importantly they argue that Bernard and Neubauer acted independently of each other. Moreover, the secrecy was required by laws at the time. “It was illegal at the time of the study to provide information about biological families to adoptive parents, a practice that did not begin to be modified until the late 1970s and 1980s.”

Hoffman and Oppenheim conclude:

“So the study was ethically defensible by the standards of its time—principles of informed consent and the development of institutional review boards lay in the future.10 However, these documentaries demonstrate how unsatisfactory that defense is to the study’s families who live with its legacy.

The films’ message for today’s child specialists and researchers is thus something other than their surface themes of outrage and restitution. They rather provide an unusually dramatic example of the potential for harm from human participant research, even if only observational.”

I would like to draw four other lessons from this episode.

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Press Release: In Defence of Intersex Athletes

Julian Savulescu

The Court of Arbitration for Sport (CAS) has announced that multiple Olympic and World Champion runner Caster Semenya and other athletes with disorders of sex (DSD) conditions will have to take testosterone lowering agents in order to be able to compete in her events.

Reducing the testosterone levels of existing intersex female athletes is unfair and unjust.

The term intersex covers a range of conditions. While intersex athletes have raised levels of testosterone, its effect on individual performance is not clear.  Some disorders which cause intersex change the way the body responds to testosterone. For example, in Androgen Insensitivity syndrome, the testosterone receptor may be functionless or it may be partly functional. In the complete version of the disorder, although there are high levels of testosterone present, it has no effect.

As we don’t know what effect testosterone has for these athletes , setting a maximum level is sketchy because we are largely guessing from physical appearance to what extent it is affecting the body. It is not very scientific. We simply don’t know how much advantage some intersex athletes are getting even from apparently high levels of testosterone. Continue reading

The Fundamental Ethical Flaw in Jiankui He’s Alleged Gene Editing Experiment

By Julian Savulescu

Chinese researcher Jiankui He of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV).

On July 29, 2017, He uploaded a copy of his lecture on YouTube, “Evaluating the safety of germline genome editing in mouse, monkey and human embryos“. He finishes the lecture (see 11:22) arguing that experimentation in humans should be “slow” and with “caution”, remarking that “a single case of failure might kill the entire field”, as in the case of the death of Jesse Gelsinger. He closes with a picture of Gelsinger.

Gelsinger died during a somatic (not germline) gene therapy trial nearly 20 years ago. Early gene therapy trials were conducted with an emphasis on participant consent. A somatic cell gene therapy was developed for ornithine transcarbamylase deficiency, a disorder of nitrogen metabolism. The condition comes in two forms: mild, with normal life expectancy and management by diet, and severe, which is lethal in the first year. Researchers, acting on the advice of ethicists, decided to conduct the first trials in adults with the mild form of the disease as they were capable of consenting. Gelsinger consented at age 18 and died due to a catastrophic immune reaction. He would have had a normal life expectancy in the absence of the intervention.

At the time, I wrote this paper. I argued the main failing of that experiment was failure to minimise expected harm. The design of the trial was flawed; it should have been conducted in infants with the severe form of the disease, as this would have resulted in less expected harm.

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Press Statement: Monstrous Gene Editing Experiment

Chinese researcher He Jiankui of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV). 

If true, this experiment is monstrous. The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer. There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it.

This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.

It contravenes decades on ethical consensus and guidelines on the protection of human participants in research.

In many other places in the world, this would be illegal punishable by imprisonment.

Could gene editing ever be ethical? If the science progressed in the future and off target mutations reduced to acceptable and accurately measurable level, it might be reasonable to consider first-in-human trials (with appropriate safeguards and thorough ethics review) in one category of embryos: those with otherwise lethal catastrophic genetic mutations who are certain to die. Gene editing for this group might be life-saving; for these current babies, it is only life-risking.

These healthy babies are being used as genetic guinea pigs. This is genetic Russian Roulette.

Prof Julian Savulescu

Uehiro Chair in Practical Ethics

Director Oxford Uehiro Centre for Practical Ethics

University of Oxford

Victoria’s Voluntary Assisted Dying Law isn’t on a Slippery Slope

By David Copolov and Julian Savulescu 

This week the Australian Senate will debate a private members’ bill that will consider whether to overturn the 21-year-old Euthanasia Laws Act that nullified the ability of Australian self-governing territories to pass legislation in relation to euthanasia and assisted suicide.

The deliberation on whether to continue the arbitrary over-riding of the territories’ legislative autonomy in this domain will inevitably also turn a spotlight on the judiciousness of Victoria’s recent voluntary assisted dying legislation that empowers terminally ill people who are residents of our state and who are experiencing unrelievable suffering, to end their lives on their own terms.

Standing firmly and resolutely against such legislation is Professor Margaret Somerville, from the University of Notre Dame, who was interestingly described in an article in the Sydney Morning Herald two days ago as having “spent decades observing euthanasia in Canada”, even though medically assisted dying only became legal in that country in 2016.

One of the concerns she has raised is the “slippery slope” to unethical assistance in dying. Currently, this might well be on people’s minds because of the reports of the deaths of three minors during 2016-2017 as the result of euthanasia in Belgium, out of 4337 deaths during that period. The deaths of the under-18-year-olds occurred as a result of the removal of age limits on access to euthanasia in Belgium that took place as a result of legislation introduced in 2014, 12 years after the introduction of euthanasia for adults.

In contrast to Belgium (which is the only jurisdiction that places no age restrictions on euthanasia or assisted dying), the Victorian Parliament passed the Voluntary Assisted Dying Act in November last year, which limits voluntary assisted dying (VAD) to terminally ill people 18 years and older, who fulfil very strict criteria in relation to experiencing unrelievable suffering and possessing sufficient decision-making capabilities. They must be in the last six months of life, unless they’re suffering from a neurodegenerative disease, in which case they must be in the last 12 months of life.

There are many reasons that both the Victorian Legislative Council’s Inquiry into end of life choices and the Ministerial Advisory Panel on Voluntary Assisted Dying recommended limiting VAD to adults, including the fact that the extensive consultations with the Victorian public led to the firm conclusion that, as stated in the inquiry’s final report: “Victorian values do not support allowing assisted dying to be provided to those who are yet to reach adulthood.”

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Should Gene Editing Be Compulsory?

Written by Julian Savulescu

Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease

Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme–  glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.

Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).

In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.

Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.

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Womb Transplants and Child-Centred Surrogacy

 

Julian Savulescu

Womb transplants are again in the news as Richard Paulson, president of the American Society for Reproductive Medicine (ASRM), said there was no reason to believe that the treatment could not work for transgender women at recent conference in Texas.

The ethical issues of performing a womb transplant for a transgender women are substantially the same as the issues facing ciswomen.

The most important ethical consideration in the UK for a womb transplant is distributive justice. Limited health care resources should not be used for womb transplants because there are more cost effective methods of assisted reproduction available. However if an individual wishes to use their own funds for such a procedure, they should be made aware of the risks (which are very significant), and the alternatives, such as surrogacy.

The best interests of the future child is another critical consideration. The moral status of the fetus is a topic of much debate. However, even if we consider abortion to be acceptable, and deny that the fetus has a moral status that accords it its own interests, in cases where the mother plans to carry the pregnancy to term, the fetus represents the future child who does of course have interests (albeit that they are to be weighed against the mother’s own interests, and that the mother is responsible for making decisions on their behalf).

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Blade Runner 2049, Parfit and Identity

Julian Savulescu

 

Contains spoilers for both Blade Runner films. This is a longer version of a shorter piece without spoilers, Blade Runner 2049: Identity, Humanity, and Discrimination, in Pursuit 

Blade Runner 2049, like the original, is about identity, humanity and discrimination.

Identity and Humanity

In both films, bioengineered humans are known as replicants.  Blade Runners “retire” or kill these replicants when they are a threat to society. In the original, Blade Runner Rick Deckard (Harrison Ford) has all the memories and feelings of a human and believes himself to be a human, only at the end to discover he is a replicant. In the sequel, K (Ryan Gosling) is a replicant but comes to believe (falsely) that he is Deckard’s child. In Blade Runner 2049, we are left to watch K dying, realising his memories were implanted by Deckard’s daughter.

In both films we are left wondering what difference there is between a human and a replicant. In the original, rogue replicant Roy Batty (Rutger Hauer) saves Deckard’s life (as Deckard was trying to kill him) and delivers famous “Tears in the Rain” speech:

“I’ve seen things you people wouldn’t believe. Attack ships on fire off the shoulder of Orion. I watched C-beams glitter in the dark near the Tannhäuser Gate. All those moments will be lost in time, like tears in rain. Time to die.”

Roy comes across as more human than the humans in the film. Indeed, in a preceding scene, a thorn or spike appears through his hand reminiscent of Christ, whose own identity as fully human and fully divine has puzzled Theologians for two millenia.

Both films challenge what it is to be human. In 2049, K believes the child of Deckard might have a soul because it was born.

Who are we?

The films both raise fundamental questions about personal identity: who are we? What fundamentally defines the existence of a person from one moment to the next? In both films, there is the suggestion that the biological mass, the body, is not what matters but the mind. In the original, bioengineered Roy seems as human as Deckard, as human as someone could be. In 2049, the idea is extended further still: K’s girlfriend Joi is an AI but seems as real as the other characters and her death is equally tragic.

Derek Parfit died in January this year. He was the world’s most famous moral philosopher (and his favourite film was another Ridley Scott classic, The Duellists). One of his famous ideas is that “identity” is not what matters. He articulated this in his masterpiece, Reasons and Persons (Oxford: Clarendon Press, 1984). According to Parfit, what matters is psychological continuity and connectedness, that is, the unity of our mental states.

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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

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