Press Release: ISSCR Guidelines for Stem Cell Research and Clinical Translation
Response to the: ISSCR Guidelines for Stem Cell Research and Clinical Translation
“The new ISSCR guidelines provide a much welcomed framework for research that many find ethically contentious.
Genome editing, the creation of human gametes in a lab, and the creation of human/non-human chimeras raise fundamental ethical issues that scientists can no longer overlook. The ISSCR guidelines put this research front and centre, making it now impossible for scientists to ignore the important ethical issues that they face. The guidelines also show why ethics must be an integral part of the education of scientists working in these areas.
However, there is a problem with how the guidelines justify that human heritable genome editing should not be permitted at this moment in time. Their main point is that reproductive human heritable genome editing ‘raise[s] unresolved ethical issues’. This is problematic because one could use this same justification for stopping all stem cell research.”
Dr César Palacios-González, Senior Research Fellow in Practical Ethics, Oxford Uehiro Centre for Practical Ethics, University of Oxford
Further Research:
Read more about the ethics of chimera, in vitro gametogenesis, and stem cell research:
Chimeras intended for human gamete production: an ethical alternative?. Reproductive biomedicine online (2017), 35(4), 387-390. [Palacios-González, César.]
Reproductive genome editing interventions are therapeutic, sometimes. Bioethics (2021). [Palacios‐González, César. ]
The regulation of mitochondrial replacement techniques around the world. Annual review of genomics and human genetics 21 (2020): 565-586. [Cohen, I. Glenn, Eli Y. Adashi, Sara Gerke, César Palacios-González, and Vardit Ravitsky]
Human dignity and the creation of human–nonhuman chimeras. Medicine, Health Care and Philosophy 18, no. 4 (2015): 487-499. [Palacios-González, César]
Multiplex parenting: in vitro gametogenesis and the generations to come. Journal of Medical Ethics 40, no. 11 (2014): 752-758. [Palacios-González, César, John Harris, and Giuseppe Testa]
Press Release: Medical and ethical experts say ‘make general anaesthesia more widely available for dying patients’
General anaesthesia is widely used for surgery and diagnostic interventions, to ensure the patient is completely unconscious during these procedures. However, in a paper published in Anaesthesia (a journal of the Association of Anaesthetists) ethics and anaesthesia experts from the University of Oxford say that general anaesthesia should be more widely available for patients at the end of their lives.
Painkilling medications (analgesia) are commonly given to dying patients. But they may not be enough, leading to the use of continuous deep sedation (also known as “palliative” or “terminal” sedation).
“However, for some patients these common interventions are not enough. Other patients may express a clear desire to be completely unconscious as they die,” explains co-author Professor Julian Savulescu, Uehiro Chair of Practical Ethics, University of Oxford, UK. “Some dying patients just want to sleep. Patients have a right to be unconscious if they are dying. We have the medical means to provide this and we should.”
The authors make clear that their proposal is not about assisted dying, currently illegal in the UK. Instead, their focus is on options available to ensure that patients are comfortable at the end of their lives.
Put simply, some patients will want to be certain they are unconscious and unaware as their final moments arrive.
“The desire to be unconscious as a means of eliminating the experience of physical or mental suffering is understandable,” says co-author Jaideep Pandit, Professor of Anaesthesia at Oxford University Hospitals NHS Foundation Trust, UK. “Unconsciousness through general anaesthesia offers the highest chance of making sure that the patient is unaware of going through an adverse process.”
He adds that “although general anaesthesia in end-of-life care has been used and described in the UK since 1995, modern multidisciplinary guidelines will be needed before this can be offered more widely. Raising this issue now is important, especially in view of international trends showing increased use of general anaesthesia for dying patients.”
Informed consent will, say the authors, be crucial in helping patients understand implications of general anaesthesia for end-of-life care, and the other options they have to manage their final days.
“It is vital that patients are informed of all the legal options available to them to relieve suffering at the end of life. That includes analgesia, sedation and, potentially now, anaesthesia,” says co-author Professor Dominic Wilkinson, Director of Medical Ethics, Uehiro Centre for Practical Ethics at the University of Oxford, UK. “The risks and benefits of each should be explained. Patients should be free to choose the option, or combination of options, that best meet their values.”
In a separate survey of the general public, published recently in the journal PLOS One, Professors Wilkinson and Savulescu found a high level of support for access to deep sedation in dying patients. Some 88% of those surveyed said they would like the option of a general anaesthetic if they were dying. About two thirds (64%) said they would personally choose to have an anaesthetic at the end of life.
Professor Wilkinson adds “members of the general public appear to value the option of deep sleep and complete relief from pain if they were dying. Our previous research indicates that the public believes that patients should be given this choice.”
The authors counter any concerns that the use of general anaesthesia for end-of-life care could hasten death. Studies show no statistically significant difference in mean survival time between patients at the end of life who receive continuous deep sedation and those who do not. In several countries, propofol infusion as used for general anaesthesia has been continued for up to 14 days. “This stresses the point that the purpose of administering anaesthesia is not to hasten death but simply to achieve unconsciousness.” explains co- author Antony Takla, Research Associate at the Uehiro Centre for Practical Ethics, University of Oxford.
The authors believe the UK medical community should prepare for increased requests for general anaesthesia for end-of-life care, based on current trends in Western Europe and Scandinavia.
They conclude: “we have described a potential role for general anaesthesia in end-of-life care. This has, in reality, been available to UK patients since the 1990s, but is not commonly discussed or provided. There is a strong ethical case for making this option more widely available. This does not imply that existing palliative care practice is deficient. Indeed, we might see that general anaesthesia in end-of-life care is requested by, or suitable for, very few patients.”
“However, the number of patients involved should not alone determine whether this issue is regarded as ethically important. Even if complete unconsciousness is desired by only a few patients, there is a moral imperative for national anaesthesia, palliative care and nursing organisations to prepare for the possibility that general anaesthesia in end-of-life care may be requested by some patients, and to work collaboratively to develop clear protocols to address all of the practical, ethical and medicolegal issues concerned.”
Press Release: Majority of UK public want choice at the end of life – survey
Most people in the UK would like the option of being heavily sedated, having a general anaesthestic or to having euthanasia, if they were dying, according to Oxford research published today in the medical journal PLOS One.
Professor Dominic Wilkinson, Professor Julian Savulescu and colleagues from the Oxford Uehiro Centre for Practical Ethics, surveyed more than 500 adults in August 2020 on their views about the care of a patient who had one week to live.
The study found a high level of support for access to deep sedation in dying patients.
Some 88% said they would like the option of a general anaesthetic if they were dying. Meanwhile, 79% of those surveyed said they would like to have the option of euthanasia.
But just 64% said they would personally choose anaesthetic at the end of life and nearly half said they would not choose euthanasia for themselves or a family member.
The report maintains, ‘This study indicates that a substantial proportion of the general community support a range of options at the end of life, including some that are not currently offered in the UK.’
According to Professor Wilkinson, ‘Previous surveys have shown that a large proportion of the UK public wish to have the option of euthanasia. This study shows an even larger number wish to have the choice of being heavily sedated or even receiving a general anaesthetic if they were dying.’
He continues, ‘Currently, in the UK it is legal for doctors to provide pain relief to dying patients, and to use sedatives if that is not enough to keep a patient comfortable. Heavy sedation is used as an option of last resort. General anaesthesia is not currently considered. But members of the general public value the option of deep sleep and complete relief from pain if they were dying. They believe that patients should be given this choice.’
Meanwhile, Professor Savulescu adds, ‘Patients have a right to be unconscious if they are dying. This survey shows that the general public want to have greater choice at the end of life.’
ENDS
Notes for Editors
For more information, please contact news.office@admin.ox.ac.uk
1. The survey is based on two anonymous online surveys of members of the UK public, sampled to be representative. They were given a scenario of a hypothetical terminally ill patient with one week to live and asked about the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia.
2. Across both surveys, a majority had undertaken higher education, with seven in 10 having A levels or higher qualifications. Meanwhile, just 2.4% overall had no qualifications.
3. Just over half of all respondents said they were religious with 13.8% describing themselves as very religious.
Press Release: UK Approves COVID-19 Challenge Studies
Responses to the UK COVID-19 Challenge Studies:
“In a pandemic, time is lives. So far, over a million people have died.
“There is a moral imperative to develop to a safe and effective vaccine – and to do so as quickly as possible. Challenge studies are one way of accelerating vaccine research. They are ethical if the risks are fully disclosed and they are reasonable. The chance of someone aged 20-30 dying of COVID-19 is about the same as the annual risk of dying in a car accident. That is a reasonable risk to take, especially to save hundreds of thousands of lives. It is surprising challenge studies were not done sooner. Given the stakes, it is unethical not to do challenge studies.”
Prof Julian Savulescu, Uehiro Chair in Practical Ethics, and Director of the Oxford Uehiro Centre for Practical Ethics, and Co-Director of the Wellcome Centre for Ethics and Humanities, University of Oxford
“Human challenge studies are an important and powerful research tool to help accelerate our understanding of infectious diseases and vaccine development. They have been used for many years for a range of different infections.
“The announcement of the UK Human Challenge Program is a vital step forward for the UK and the world in our shared objective of bringing the COVID-19 pandemic to an end. With cases climbing across Europe, and more than 1.2 million deaths worldwide, there is an urgent ethical imperative to explore and establish COVID-19 challenge trials.
“All research needs ethical safeguards. Challenge trials need to be carefully designed to ensure that those who take part are fully informed of the risks, and that the risks to volunteers are minimised. Not everyone could take part in a challenge trial (only young, healthy volunteers are likely to be able to take part). Not everyone would choose to take part. But there are hundreds of young people in the UK and elsewhere who have already signed up to take part in COVID challenge studies. They deserve our admiration, our support and our thanks.”
Prof Dominic Wilkinson, Professor of Medical Ethics, Oxford Uehiro Centre for Practical Ethics, University of Oxford
Further Research
Read more about the ethics of challenge studies:
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
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