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.
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
Response from David S. Oderberg to “Against Conscientious Objection In Health Care: A Counterdeclaration And Reply To Oderberg”
I am grateful to Prof. Savulescu and Dr Giubilini for taking the time and care to respond in detail to my Declaration in Support of Conscientious Objection in Health Care. I also thank Prof. Savulescu for giving me the opportunity to reply to their lengthy analysis. The authors make a series of important criticisms and observations, all of which I will face directly. The topic of freedom of conscience in medicine is both contentious and likely to become increasingly urgent in the future, so it is as well to dispel misunderstandings, clarify assertions and respond to objections as thoroughly as possible. That said, I hope I do not try the reader’s patience by discussing Giubilini and Savulescu’s objections point by point, in the order in which they raise them.
Lecture and Book Launch: Ethics, Conflict and Medical Treatment for Children – From Disagreement to Dissensus
Watch the lecture by Professors Dominic Wilkinson and Julian Savulescu at the book launch for ‘Ethics, Conflict and Medical Treatment for Children’, which took place on 4 October at the Oxford Martin School, University of Oxford.
Fetal Reduction in a Multiple Pregnancy: the Case of Identical Twins
Written by Elizabeth Crisp and Roger Crisp
When a woman aborts a single fetus, that abortion can be a morally troubling experience for her. What about a situation in which a woman is pregnant with more than one fetus, perhaps identical twins, and wishes to abort just one of them – that is, engage in what is sometimes called ‘fetal reduction’ in a ‘multiple pregnancy’? Continue reading
UK Supreme Court Decision Means Patients No Longer Forced to Live
By Mackenzie Graham
On July 30, The UK’s Supreme Court ruled that there is no requirement to obtain court approval before withdrawing clinically assisted nutrition and hydration (CANH), when there is agreement between physicians and the family that this is in the best interests of the patient.
In the judgement, Lady Black writes:
“If the provisions of the MCA [Mental Capacity Act] 2005 are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.”
Until now, requests to withdraw CANH needed to be heard by the Court of Protection to determine if withdrawing treatment was in the patient’s best interest. In addition to being emotionally difficult for families, this is a time-consuming and expensive process, and often results in the patient dying before a judgement is rendered.
I think this decision has much to be said in its favour. First, it means that when there is agreement that continued treatment is no longer in the best interests of a patient with a prolonged disorder of consciousness, these patients are no longer being ‘forced to live’ until the Court affirms that being allowed to die is in their best interests. In many cases, court decisions take months, meaning that a patient is forced to be kept alive, against their best interests and the wishes of their family. Making the decision to withdraw care from a loved one is highly distressing, and this is likely further compounded by the burden and distraction of court proceedings.
The Dangers Of Deferring To Doctors
By Charles Foster
(Image: tctmd.com)
There is a dizzying circularity in much medical law. Judges make legal decisions based on the judgments of rightly directed clinicians, and rightly directed clinicians make their judgments based on what they think the judges expect of them. This is intellectually unfortunate. It can also be dangerous.
There are two causes: Judges’ reluctance to interfere with the decisions of clinicians, and doctors’ fear of falling foul of the law.
In some ways judicial deference to the judgment of professionals in a discipline very different from their own is appropriate. Judges cannot be doctors. The deference is best illustrated by the famous and ubiquitous Bolam test, which is the touchstone for liability in professional negligence cases.1 A doctor will not be negligent if their action or inaction would be endorsed by a responsible body of professional opinion in the relevant specialty.
In the realm of civil litigation for alleged negligence this deference is justified. The problem arises when the deference is exported to legal arenas where it should have no place. The classic example relates to determinations of the ‘best interests’ of incapacitous patients. Something done in relation to an incapacitous patient will only be lawful if it is in that patient’s best interests. Continue reading
The Psychology of Uncertainty, Vaccinations, and Protecting the Most Vulnerable: Was Rawls Right After All?
written by Andreas Kappes (@AnKappes), Anne-Marie Nußberger (@amnussberger ), Molly Crockett (@mollycrockett ) & Julian Savulescu (@juliansavulescu)
Measles is making a comeback in Britain and Europe with numbers rising to record levels this year. Last year in Europe, measles killed 35 people, including young children . The re-emergence of measles can be traced to falling rates of vaccination and might make you want to re-think your summer plans. Crowded environments with low levels of hygiene, also known as summer festivals, are something to avoid if unsure about whether you have been properly vaccinated. And maybe re-think going for holidays to Romania, Italy and Greece, the countries with the highest rates of measles outbreaks this year.
But of course, even if you are not vaccinated, your chances of getting measles are low. And if you are infected, dying from measles is rare. The people that die during measles outbreaks are vulnerable babies that are too young to be vaccinated and unvaccinated people with compromised immune systems. And what are the chances that you infect one of these vulnerable people? Extremely low. Your intuition then might be that even if you are unsure about your vaccination status, the low odds don’t seem to justify the effort to engage with the NHS or any other health care provider. Maximize your benefits, and others will surely be fine. Individually, this feels right, but for the communities and countries we live in, this is disastrous, slowly eroding herd immunity that protects the most vulnerable.
Treating the Dead Well
Written by Stephen Rainey
What happens after we die? This might be taken as an eschatological question, seeking some explanation or reassurance around the destiny of an immortal soul or some such vital element of our very being. But there is another sense that has at least as much importance. What should we do with dead bodies?
According to a Yougov survey from 2016, a majority of UK residents prefer cremation over burial, with their ashes scattered in some meaningful place. This could be good news, given the apparent dwindling of burial space globally. In the face of this sort of constraint, the re-use of graves becomes necessary, which can cause distress to the families of even the long dead.
Less commonly, dead bodies can be donated to medical science and put to use for purposes of research and medical training. Research suggests the rate is low owing to ‘non-cognitive factors’ such as ‘the desire to maintain bodily integrity, worries that signing a donor card might ‘jinx’ a person, and medical mistrust.’
Maybe we should think again about how we treat dead bodies. There could come a time when cremation and burial might be considered a waste of resources, given the uses to which cadavers can be put. One body can be used to train many surgeons in complex procedures by being pared into relevant sections – individual limbs, organ systems, brains. Nevertheless, whilst a corpse is indeed a valuable object, it was also previously a subject. The nature of bodies as post-persons does seem to deserve some special consideration. If we can account for this, we might be in a position to recommend very generally why we ought to respect the bodies of the dead. Continue reading
Illness and Attitude – Richard Holton’s 3rd Uehiro Lecture
By Jonathan Pugh
In the final lecture of the 2018 Uehiro lecture series, Richard Holton concluded his reflections on the theme of ‘illness and the social self’ by turning to questions about how attitudes can play a role in the onset of medical disorders, with a particular focus on psycho-somatic disorders.
You can find a recording of the lecture here
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