Julian Savulescu’s Posts

Cross Post: Ten Ethical Flaws in the Caster Semenya Decision on Intersex in Sport

Written by Julian Savulescu, University of Oxford

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Caster Semenya is legally female, was from birth raised as female and identifies as a female.
Jon Connell on flickr , CC BY-NC

Middle-distance runner Caster Semenya will need to take hormone-lowering agents, or have surgery, if she wishes to continue her career in her chosen athletic events.

The Court of Arbitration in Sport (CAS) decided last week to uphold a rule requiring athletes with certain forms of what they call “disorders of sex development” (DSD) – more commonly called “intersex” conditions – to lower their testosterone levels in order to still be eligible to compete as women in certain elite races.

The case was brought to CAS by Semenya, as she argued discrimination linked to a 2018 decision preventing some women, including herself, from competing in some female events.

This ruling is flawed. On the basis of science and ethical reasoning, there are ten reasons CAS’s decision does not stand up. Continue reading

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

Press Statement: He Jiankui

The response  to reckless human experimentation has to go way beyond Dr He’s dismissal. This is not merely a failure of compliance, Dr He failed to grasp the ethical principles and concepts he was vigorously espousing.  There will undoubtedly be more guidelines and laws on gene editing but we also need basic education of the next generation of scientists in what ethics is and why this kind of behaviour is wrong. This was not a failure of science, or even regulation, but ethics.

More important than He’s fate is the future for those victims affected. The couples and babies will need world class medical management and counselling. The second couple carrying a gene edited pregnancy should have already been fully informed of and understood the risks to their fetus and given the free choice to continue or terminate their pregnancy.

Prof Julian Savulescu
Uehiro Chair in Practical Ethics
Director Oxford Uehiro Centre for Practical Ethics
University of Oxford

Visiting Professorial Fellow
Murdoch Children’s Research Institute
And University of Melbourne

 

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.

Continue reading

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

Cross Post: Fresh Urgency in Mapping Out Ethics of Brain Organoid Research

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Written by Julian Koplin, University of Melbourne and

Julian Savulescu, University of Oxford

This article is republished from The Conversation under a Creative Commons license. Read the original article.

 

Researchers have grown groups of brain cells in the lab –
known as ‘organoids’ – that produce brain waves resembling
those found in premature infants.
from www.shutterstock.com

 

Scientists have become increasingly adept at creating brain organoids – which are essentially miniature human brains grown in the laboratory from stem cells.

Although brain organoid research might seem outlandish, it serves an important moral purpose. Among other benefits, it promises to help us understand early brain development and neurodevelopmental disorders such as microcephaly, autism and schizophrenia.

Continue reading

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.

 

Against Conscientious Objection In Health Care: A Counterdeclaration And Reply To Oderberg

Alberto Giubilini (Wellcome Centre for Ethics and Humanities, University of Oxford) and

Julian Savulescu (Uehiro Centre for Practical Ethics, University of Oxford)

Conscientious objection in health care – that is, healthcare practitioners objecting to performing certain legal, safe, and beneficial medical procedures (e.g. abortion) that a patient requests by appealing to their personal moral values – is one of the most debated topics in medical ethics at present time. Although at the moment doctors’ private conscience enjoys a lot of legal protection – most laws that make abortion legal contain clauses that exempt doctors from performing the procedure if they so wish. We have provided reasons, both in this forum and in our academic work, for why we think that conscientious objection in health care is not morally permissible and should not be allowed in the case of procedures that are legal, safe, beneficial, autonomously requested by patients and, more generally, consistent with the standards of good medical practice (see e.g. Savulescu 2006, Savulescu and Schuklenk 2017, Giubilini 2014, Giubilini 2017). Some people disagree and advance reasons for the opposite view. One of the scholars who has more clearly and straightforwardly articulated the principles and reasons in support of conscientious objection in health care is Professor Oderberg of Reading University. Prof Oderberg was recently invited to debate the issue with Julian Savulescu at the Masters Course in Practical Ethics run by the Uehiro Centre here at the University of Oxford. On that occasion, Prof Oderberg’s defense of conscientious objection centred around a series of principles and considerations that he very effectively formulated in the 17 main points that constitute his “Declaration in support of conscientious objection in health care”, published on the University of Reading website and which is available for people who agree with him to sign. Continue reading

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.”

Continue reading

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.

Continue reading

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