Julian Savulescu | University of Oxford (original) (raw)

Papers by Julian Savulescu

Bioethics, 2019

Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. It... more Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. Its treatment and prevention represent the paradigmatic example of the ethical dilemmas of 21st‐century medicine. New therapies (nusinersen and AVXS‐101) hold the promise of being able to treat, but not cure, the condition. Alternatively, genomic analysis could identify carriers, and carriers could be offered in vitro fertilization and preimplantation genetic diagnosis. In the future, gene editing could prevent the condition at the embryonic stage. How should these different options be evaluated and compared within a health system? In this paper, we discuss the ethical considerations that bear on the question of how to prioritize the different treatments and preventive options for SMA, at a policy level. We argue that despite the tremendous value of what we call ‘ex‐post’ approaches to treating SMA (such as using pharmacological agents or gene therapy), there is a moral imperative to pursue ‘ex‐ante’ interventions (such as carrier screening in combination with prenatal testing and preimplantation genetic diagnosis, or gene editing) to reduce the incidence of SMA. There are moral reasons relating to autonomy, beneficence and justice to prioritize ex‐ante methods over ex‐post methods.

npj Genomic Medicine, 2021

Genetic variants that influence susceptibility to COVID-19 have recently been identified. In this... more Genetic variants that influence susceptibility to COVID-19 have recently been identified. In this manuscript, we identify and discuss some of the ethical and practical issues raised by these studies. We first outline the ethical case for providing COVID-19 susceptibility testing to healthcare workers, as well as highlighting risks associated with privacy and discrimination. We then argue that the existence of genetically susceptible individuals has implications for the ethical conduct of COVID-19 human challenge trials. Finally, we discuss the ethical issues that could arise from other COVID-19 host–genome interactions, including the prospect of personalized vaccines.

Developing World Bioethics, 2021

In response to the COVID-19 pandemic philosophers and governments have proposed scarce resource a... more In response to the COVID-19 pandemic philosophers and governments have proposed scarce resource allocation guidelines. Their purpose is to advise healthcare professionals on how to ethically allocate scarce medical resources. One challenging feature of the pandemic has been the large numbers of patients needing mechanical ventilatory support. Guidelines have paradigmatically focused on the question of what doctors should do if they have fewer ventilators than patients who need respiratory support: which patient should get the ventilator? There is, however, an important higher level allocation problem. Namely, how are we to ethically distribute newly obtained ventilators across hospitals: which hospital should get the ventilator(s)? In this paper, we identify a set of principles for allocating newly obtained ventilators across hospitals. We focus particularly on low and middle income countries, who frequently have limited pre-existing intensive care capacity, and have needed to source additional ventilators. We first provide some background. Second, we argue that the main population healthcare aim during the COVID-19 pandemic should be to save the most lives. Next, we assess a series of potential heuristics or principles that could be used to guide allocation: allocation to the most densely populated cities, random allocation, allocation based on the ratio of patients to ICU personnel, prioritisation in terms of intrahospital mortality, prioritisation of younger populations, and prioritisation in terms of population mortality. We conclude by providing a plausible ranking of the principles, while noting a number of epistemological challenges, in terms of how they best further the aim of increasing the probability of saving the most lives.

Anaesthesia, 2021

In this article, we describe an extension of general anaesthesia – beyond facilitating surgery – ... more In this article, we describe an extension of general anaesthesia – beyond facilitating surgery – to the relief of suffering during dying. Some refractory symptoms at the end of life (pain, delirium, distress, dyspnoea) might be managed by analgesia, but in high doses, adverse effects (e.g. respiratory depression) can hasten death. Sedation may be needed for agitation or distress and can be administered as continuous deep sedation (also referred to as terminal or palliative sedation) generally using benzodiazepines. However, for some patients these interventions are not enough, and others may express a clear desire to be completely unconscious as they die. We summarise the historical background of an established practice that we refer to as ‘general anaesthesia in end‐of‐life care’. We discuss its contexts and some ethical and legal issues that it raises, arguing that these are largely similar issues to those already raised by continuous deep sedation. To be a valid option, general anaesthesia in end‐of‐life care will require a clear multidisciplinary framework and consensus practice guidelines. We see these as an impending development for which the specialty should prepare. General anaesthesia in end‐of‐life care raises an important debate about the possible role of anaesthesia in the relief of suffering beyond the context of surgical/diagnostic interventions.

PLOS ONE, 2021

Background: Many patients at the end of life require analgesia to relieve pain. Additionally, up ... more Background: Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called "terminal anaesthesia", TA). However, the general public's views about sedation in EOLC are not known. We sought to investigate the general public's views to inform policy and practice in the UK.

Methods: We performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia.

Findings: Of the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were.

Interpretation: These novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

Journal of Pediatrics, 2021

Whether children should be vaccinated against coronavirus disease-2019 (COVID-19) (or other infec... more Whether children should be vaccinated against coronavirus disease-2019 (COVID-19) (or other infectious diseases such as influenza) and whether some degree of coercion should be exercised by the state to ensure high uptake depends, among other things, on the safety and efficacy of the vaccine. For COVID-19, these factors are currently unknown for children, with unanswered questions also on children’s role in the transmission of the virus, the extent to which the vaccine will decrease transmission, and the expected benefit (if any) to the child. Ultimately, deciding whether to recommend that children receive a novel vaccine for a disease that is not a major threat to them, or to mandate the vaccine, requires precise information on the risks, including disease severity and vaccine safety and effectiveness, a comparative evaluation of the alternatives, and the levels of coercion associated with each. However, the decision also requires balancing self-interest with duty to others, and liberty with usefulness. Separate to ensuring vaccine supply and access, we outline 3 requirements for mandatory vaccination from an ethical perspective: (1) whether the disease is a grave threat to the health of children and to public health, (2) positive comparative expected usefulness of mandatory vaccination, and (3) proportionate coercion. We also suggest that the case for mandatory vaccine in children may be strong in the case of influenza vaccination during the COVID-19 pandemic. (J Pediatr 2021;231:10-6).

Public Health Ethics, 2021

Seasonal influenza kills many hundreds of thousands of people every year. We argue that the curre... more Seasonal influenza kills many hundreds of thousands of people every year. We argue that the current pandemic has lessons we should learn concerning how we should respond to it. Our response to the COVID-19 not only provides us with tools for confronting influenza; it also changes our sense of what is possible. The recognition of how dramatic policy responses to COVID-19 were and how widespread their general acceptance has been allowed us to imagine new and more sweeping responses to influenza. In fact, we not only can grasp how we can reduce its toll; this new knowledge entails new responsibilities to do so. We outline a range of potential interventions to alter social norms and to change structures to reduce influenza transmission, and consider ethical objections to our proposals.

Bioethics, 2021

The rapid development of vaccines against COVID‐19 represents a huge achievement, and offers hope... more The rapid development of vaccines against COVID‐19 represents a huge achievement, and offers hope of ending the global pandemic. At least three COVID‐19 vaccines have been approved or are about to be approved for distribution in many countries. However, with very limited initial availability, only a minority of the population will be able to receive vaccines this winter. Urgent decisions will have to be made about who should receive priority for access. Current policy in the UK appears to take the view that those who are most vulnerable to COVID‐19 should get the vaccine first. While this is intuitively attractive, we argue that there are other possible values and criteria that need to be considered. These include both intrinsic and instrumental values. The former are numbers of lives saved, years of life saved, quality of the lives saved, quality‐adjusted life‐years (QALYs), and possibly others including age. Instrumental values include protecting healthcare systems and other broader societal interests, which might require prioritizing key worker status and having dependants. The challenge from an ethical point of view is to strike the right balance among these values. It also depends on effectiveness of different vaccines on different population groups and on modelling around cost‐effectiveness of different strategies. It is a mistake to simply assume that prioritizing the most vulnerable is the best strategy. Although that could end up being the best approach, whether it is or not requires careful ethical and empirical analysis.

Health Care Analysis, 2021

In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to m... more In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to make distressing triaging decisions about which individual patients should receive potentially life-saving treatment. Much of the ethical discussion prompted by the pandemic has concerned which moral principles should ground our response to these individual triage questions. In this paper we aim to broaden the scope of this discussion by considering the ethics of broader structural allocation decisions raised by the COVID-19 pandemic. More specifically, we consider how nations ought to distribute a scarce life-saving resource across healthcare regions in a public health emergency, particularly in view of regional differences in projected need and existing capacity. We call this the regional triage question. Using the case study of ventilators in the COVID-19 pandemic, we show how the moral frameworks that we might adopt in response to individual triage decisions do not translate straightforwardly to this regional-level triage question. Having outlined what we take to be a plausible egalitarian approach to the regional triage question, we go on to propose a novel way of operationalising the 'save the most lives' principle in this context. We claim that the latter principle ought to take some precedence in the regional triage question, but also note important limitations to the extent of the influence that it should have in regional allocation decisions.

Bioethics, 2021

We argue that we should provide extra payment not only for extra time worked but also for the ext... more We argue that we should provide extra payment not only for extra time worked but also for the extra risks healthcare workers (and those working in healthcare settings) incur while caring for COVID‐19 patients—and more generally when caring for patients poses them at significantly higher risks than normal. We argue that the extra payment is warranted regardless of whether healthcare workers have a professional obligation to provide such risky healthcare. Payment for risk would meet four essential ethical requirements. First, assuming healthcare workers do not have a professional obligation to take on themselves the risks, payments in the form of incentives would preserve autonomy in deciding what risks to take on oneself. Second, even assuming that healthcare workers do have a professional obligation to take on themselves the risks, payments for risk would create fair working conditions by avoiding exploitation. Third, payments for risk would make it more likely that public healthcare systems can discharge their institutional responsibility to provide healthcare in circumstances where healthcare workers may otherwise (perhaps legitimately) opt out. Fourth, payments for risk would guarantee an efficient healthcare system in pandemic situations. Finally, we address two likely objections that some might raise against our proposal, particularly with regard to incentives, namely that such payments or incentives can themselves be coercive and that they represent a form of undue inducement.

Journal of Medical Ethics, 2020

Journal of Medical Ethics, 2021

The past few years have brought significant breakthroughs in understanding human genetics. This k... more The past few years have brought significant breakthroughs in understanding human genetics. This knowledge has been used to develop 'polygenic scores' (or 'polygenic risk scores') which provide probabilistic information about the development of polygenic conditions such as diabetes or schizophrenia. They are already being used in reproduction to select for embryos at lower risk of developing disease. Currently, the use of polygenic scores for embryo selection is subject to existing regulations concerning embryo testing and selection. Existing regulatory approaches include 'disease-based' models which limit embryo selection to avoiding disease characteristics (employed in various formats in Australia, the UK, Italy, Switzerland and France, among others), and 'laissez-faire' or 'libertarian' models, under which embryo testing and selection remain unregulated (as in the USA). We introduce a novel 'Welfarist Model' which limits embryo selection according to the impact of the predicted trait on well-being. We compare the strengths and weaknesses of each model as a way of regulating polygenic scores. Polygenic scores create the potential for existing embryo selection technologies to be used to select for a wider range of predicted genetically influenced characteristics including continuous traits. Indeed, polygenic scores exist to predict future intelligence, and there have been suggestions that they will be used to make predictions within the normal range in the USA in embryo selection. We examine how these three models would apply to the prediction of non-disease traits such as intelligence. The genetics of intelligence remains controversial both scientifically and ethically. This paper does not attempt to resolve these issues. However, as with many biomedical advances, an effective regulatory regime must be in place as soon as the technology is available. If there is no regulation in place, then the market effectively decides ethical issues.

Bioethics, 2020

One of the most commonly referenced ethical principles when it comes to the management of dying p... more One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom-focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it.
Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom-based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call Terminal Anaesthesia in this paper). After examining the common arguments for the various types of symptom-based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients.

Journal of Law and the Biosciences, 2020

When we have a vaccine against COVID-19, who should be vaccinated first? The question is relevant... more When we have a vaccine against COVID-19, who should be vaccinated first? The question is relevant because, initially, vaccine availability will likely be limited. After healthcare and some other essential workers, it might seem the most obvious candidates are the elderly and other groups that are more vulnerable to the virus. However, we argue that this is not necessarily the case. Protecting the most vulnerable might require prioritizing vaccinating children in order to maximize the benefits of indirect immunity for the elderly and the other vulnerable groups. Whether this will be the best strategy from a public health perspective will depend on characteristics of the vaccine and of the virus, which are currently unknown. Here, we assess this possibility from an ethical point of view, by drawing comparisons and analogies with the case of the flu vaccination and with other examples of health policies and practices. We conclude that there are strong ethical reasons to vaccinate the young to protect the old, provided that the risks imposed on children are reasonable, even if that implies using children as a means to protect the elderly and the vulnerable.

Journal of Medical Ethics, 2021

The UK government has put Lateral Flow Antigen Tests (LFATs) at the forefront of its strategy to ... more The UK government has put Lateral Flow Antigen Tests (LFATs) at the forefront of its strategy to scale up testing in the coronavirus pandemic. However, evidence from a pilot trial using an LFAT to identify asymptomatic infections in the community suggests that the test missed over half of the positive cases in the tested population. This raises the question of whether it can it be ethical to use an inaccurate test to guide public health measures. We begin by explicating different dimensions of test accuracy (sensitivity, specificity, and predictive value), and why they matter morally, before highlighting key data from the Liverpool pilot. We argue that the poor sensitivity of the LFAT in this pilot suggests that there are important limitations to what we can expect these tests to achieve. A test with low sensitivity will provide false negative results, and in doing so generate the risk of false assurance and its attendant moral costs. However, we also suggest that the deployment of an insensitive but specific test could identify many asymptomatic carriers of the virus who are currently being missed under existing arrangements. Having outlined ways in which the costs of false reassurance could potentially be mitigated, we conclude that the use of an insensitive LFAT in mass testing may be ethical if (i) it is used predominantly to identify positive cases (ii) it is a cost-effective method of achieving that goal and (iii) if other public health tools can effectively prevent widespread false reassurance.

Bioethics, 2021

Genetic engineering has been a topic of discussion for over 50 years, but only recently that has ... more Genetic engineering has been a topic of discussion for over 50 years, but only recently that has gene editing become a reality. CRISPR biotechnologies have made gene editing much safer, precise and overall feasible. We have witnessed the first cases of human germline genetic modification resulting in live births conducted by He Jiankui. In this paper, we will analyse He Jiankui´s case in relation to one of the most difficult problems in procreative ethics (or ethics of future generations): the non-identity problem. We believe this analysis will help us understand the ethics involved in gene editing and hopefully allow for a better, more philosophically grounded legislation on CRISPR and other gene editing technologies.

Ramon Llull Journal of Applied Ethics, 2020

In this paper we will discuss the status of gene editing technologies like CRISPR. We will examin... more In this paper we will discuss the status of gene editing technologies like CRISPR. We will examine whether this technology should be considered a form of enhancement, or if CRISPR is merely a medical technology analogous to many of the common medical interventions of today. The importance of this discussion arises from the enormous potential of CRISPR to increase human health and welfare. If we interrupt or delay its investigation and implementation based on misconceptions about its nature and consequences, we may fail to achieve great benefits. Clarifying what CRISPR is and how it compares to other medical procedures should create the right environment to discuss its development and introduction in society. We argue that gene editing is both a conventional medical technology and a potential human enhancer. It is important to separate these different applications. Just as in the cloning debate, it is possible to sort out therapeutic gene editing from enhancement gene editing in considering regulation or policy.

BMJ Open, 2020

Objective: As cases of COVID-19 infections surge, concerns have renewed about intensive care unit... more Objective: As cases of COVID-19 infections surge, concerns have renewed about intensive care units (ICU) being overwhelmed and the need for specific triage protocols over winter. This study aimed to help inform triage guidance by exploring the view of lay people about factors to include in triage decisions.
Design, setting and participants: Online survey between 29th May and 22nd June 2020 based on hypothetical triage dilemmas. Participants recruited from existing market research panels, representative of the UK general population. Scenarios were presented in which a single ventilator is available, and two patients require ICU admission and ventilation. Patients differed in one of: chance of survival, life expectancy, age, expected length of treatment, disability, and degree of frailty. Respondents were given the option of choosing one patient to treat, or tossing a coin to decide.
Results: Seven hundred and sixty-three participated. A majority of respondents prioritized patients who would have a higher chance of survival (72-93%), longer life expectancy (78-83%), required shorter duration of treatment (88-94%), were younger (71-79%), or had a lesser degree of frailty (60-69% all p< .001). Where there was a small difference between two patients, a larger proportion elected to toss a coin to decide which patient to treat. A majority (58-86%) were prepared to withdraw treatment from a patient in intensive care who had a lower chance of survival than another patient currently presenting with COVID-19. Respondents also indicated a willingness to give higher priority to healthcare workers and to patients with young children.
Conclusion: Members of the UK general public potentially support a broadly utilitarian approach to ICU triage in the face of overwhelming need. Survey respondents endorsed the relevance of patient factors currently included in triage guidance, but also factors not currently included. They supported the permissibility of reallocating treatment in a pandemic.

Journal of Medical Ethics, 2020

Mandatory vaccination, including for COVID-19, can be ethically justified if the threat to public... more Mandatory vaccination, including for COVID-19, can be ethically justified if the threat to public health is grave, the confidence in safety and effectiveness is high, the expected utility of mandatory vaccination is greater than the alternatives, and the penalties or costs for non-compliance are proportionate. I describe an algorithm for justified mandatory vaccination. Penalties or costs could include withholding of benefits, imposition of fines, provision of community service or loss of freedoms. I argue that under conditions of risk or perceived risk of a novel vaccination, a system of payment for risk in vaccination may be superior. I defend a payment model against various objections, including that it constitutes coercion and undermines solidarity. I argue that payment can be in cash or in kind, and opportunity for altruistic vaccinations can be preserved by offering people who have been vaccinated the opportunity to donate any cash payment back to the health service.

Bioethics, 2019

Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. It... more Spinal muscular atrophy (SMA) is the most common genetic disease that causes infant mortality. Its treatment and prevention represent the paradigmatic example of the ethical dilemmas of 21st‐century medicine. New therapies (nusinersen and AVXS‐101) hold the promise of being able to treat, but not cure, the condition. Alternatively, genomic analysis could identify carriers, and carriers could be offered in vitro fertilization and preimplantation genetic diagnosis. In the future, gene editing could prevent the condition at the embryonic stage. How should these different options be evaluated and compared within a health system? In this paper, we discuss the ethical considerations that bear on the question of how to prioritize the different treatments and preventive options for SMA, at a policy level. We argue that despite the tremendous value of what we call ‘ex‐post’ approaches to treating SMA (such as using pharmacological agents or gene therapy), there is a moral imperative to pursue ‘ex‐ante’ interventions (such as carrier screening in combination with prenatal testing and preimplantation genetic diagnosis, or gene editing) to reduce the incidence of SMA. There are moral reasons relating to autonomy, beneficence and justice to prioritize ex‐ante methods over ex‐post methods.

npj Genomic Medicine, 2021

Genetic variants that influence susceptibility to COVID-19 have recently been identified. In this... more Genetic variants that influence susceptibility to COVID-19 have recently been identified. In this manuscript, we identify and discuss some of the ethical and practical issues raised by these studies. We first outline the ethical case for providing COVID-19 susceptibility testing to healthcare workers, as well as highlighting risks associated with privacy and discrimination. We then argue that the existence of genetically susceptible individuals has implications for the ethical conduct of COVID-19 human challenge trials. Finally, we discuss the ethical issues that could arise from other COVID-19 host–genome interactions, including the prospect of personalized vaccines.

Developing World Bioethics, 2021

In response to the COVID-19 pandemic philosophers and governments have proposed scarce resource a... more In response to the COVID-19 pandemic philosophers and governments have proposed scarce resource allocation guidelines. Their purpose is to advise healthcare professionals on how to ethically allocate scarce medical resources. One challenging feature of the pandemic has been the large numbers of patients needing mechanical ventilatory support. Guidelines have paradigmatically focused on the question of what doctors should do if they have fewer ventilators than patients who need respiratory support: which patient should get the ventilator? There is, however, an important higher level allocation problem. Namely, how are we to ethically distribute newly obtained ventilators across hospitals: which hospital should get the ventilator(s)? In this paper, we identify a set of principles for allocating newly obtained ventilators across hospitals. We focus particularly on low and middle income countries, who frequently have limited pre-existing intensive care capacity, and have needed to source additional ventilators. We first provide some background. Second, we argue that the main population healthcare aim during the COVID-19 pandemic should be to save the most lives. Next, we assess a series of potential heuristics or principles that could be used to guide allocation: allocation to the most densely populated cities, random allocation, allocation based on the ratio of patients to ICU personnel, prioritisation in terms of intrahospital mortality, prioritisation of younger populations, and prioritisation in terms of population mortality. We conclude by providing a plausible ranking of the principles, while noting a number of epistemological challenges, in terms of how they best further the aim of increasing the probability of saving the most lives.

Anaesthesia, 2021

In this article, we describe an extension of general anaesthesia – beyond facilitating surgery – ... more In this article, we describe an extension of general anaesthesia – beyond facilitating surgery – to the relief of suffering during dying. Some refractory symptoms at the end of life (pain, delirium, distress, dyspnoea) might be managed by analgesia, but in high doses, adverse effects (e.g. respiratory depression) can hasten death. Sedation may be needed for agitation or distress and can be administered as continuous deep sedation (also referred to as terminal or palliative sedation) generally using benzodiazepines. However, for some patients these interventions are not enough, and others may express a clear desire to be completely unconscious as they die. We summarise the historical background of an established practice that we refer to as ‘general anaesthesia in end‐of‐life care’. We discuss its contexts and some ethical and legal issues that it raises, arguing that these are largely similar issues to those already raised by continuous deep sedation. To be a valid option, general anaesthesia in end‐of‐life care will require a clear multidisciplinary framework and consensus practice guidelines. We see these as an impending development for which the specialty should prepare. General anaesthesia in end‐of‐life care raises an important debate about the possible role of anaesthesia in the relief of suffering beyond the context of surgical/diagnostic interventions.

PLOS ONE, 2021

Background: Many patients at the end of life require analgesia to relieve pain. Additionally, up ... more Background: Many patients at the end of life require analgesia to relieve pain. Additionally, up to 1/5 of patients in the UK receive sedation for refractory symptoms at the end of life. The use of sedation in end-of-life care (EOLC) remains controversial. While gradual sedation to alleviate intractable suffering is generally accepted, there is more opposition towards deliberate and rapid sedation to unconsciousness (so-called "terminal anaesthesia", TA). However, the general public's views about sedation in EOLC are not known. We sought to investigate the general public's views to inform policy and practice in the UK.

Methods: We performed two anonymous online surveys of members of the UK public, sampled to be representative for key demographic characteristics (n = 509). Participants were given a scenario of a hypothetical terminally ill patient with one week of life left. We sought views on the acceptability of providing titrated analgesia, gradual sedation, terminal anaesthesia, and euthanasia. We asked participants about the intentions of doctors, what risks of sedation would be acceptable, and the equivalence of terminal anaesthesia and euthanasia.

Findings: Of the 509 total participants, 84% and 72% indicated that it is permissible to offer titrated analgesia and gradual sedation (respectively); 75% believed it is ethical to offer TA. Eighty-eight percent of participants indicated that they would like to have the option of TA available in their EOLC (compared with 79% for euthanasia); 64% indicated that they would potentially wish for TA at the end of life (52% for euthanasia). Two-thirds indicated that doctors should be allowed to make a dying patient completely unconscious. More than 50% of participants believed that TA and euthanasia were non-equivalent; a third believed they were.

Interpretation: These novel findings demonstrate substantial support from the UK general public for the use of sedation and TA in EOLC. More discussion is needed about the range of options that should be offered for dying patients.

Journal of Pediatrics, 2021

Whether children should be vaccinated against coronavirus disease-2019 (COVID-19) (or other infec... more Whether children should be vaccinated against coronavirus disease-2019 (COVID-19) (or other infectious diseases such as influenza) and whether some degree of coercion should be exercised by the state to ensure high uptake depends, among other things, on the safety and efficacy of the vaccine. For COVID-19, these factors are currently unknown for children, with unanswered questions also on children’s role in the transmission of the virus, the extent to which the vaccine will decrease transmission, and the expected benefit (if any) to the child. Ultimately, deciding whether to recommend that children receive a novel vaccine for a disease that is not a major threat to them, or to mandate the vaccine, requires precise information on the risks, including disease severity and vaccine safety and effectiveness, a comparative evaluation of the alternatives, and the levels of coercion associated with each. However, the decision also requires balancing self-interest with duty to others, and liberty with usefulness. Separate to ensuring vaccine supply and access, we outline 3 requirements for mandatory vaccination from an ethical perspective: (1) whether the disease is a grave threat to the health of children and to public health, (2) positive comparative expected usefulness of mandatory vaccination, and (3) proportionate coercion. We also suggest that the case for mandatory vaccine in children may be strong in the case of influenza vaccination during the COVID-19 pandemic. (J Pediatr 2021;231:10-6).

Public Health Ethics, 2021

Seasonal influenza kills many hundreds of thousands of people every year. We argue that the curre... more Seasonal influenza kills many hundreds of thousands of people every year. We argue that the current pandemic has lessons we should learn concerning how we should respond to it. Our response to the COVID-19 not only provides us with tools for confronting influenza; it also changes our sense of what is possible. The recognition of how dramatic policy responses to COVID-19 were and how widespread their general acceptance has been allowed us to imagine new and more sweeping responses to influenza. In fact, we not only can grasp how we can reduce its toll; this new knowledge entails new responsibilities to do so. We outline a range of potential interventions to alter social norms and to change structures to reduce influenza transmission, and consider ethical objections to our proposals.

Bioethics, 2021

The rapid development of vaccines against COVID‐19 represents a huge achievement, and offers hope... more The rapid development of vaccines against COVID‐19 represents a huge achievement, and offers hope of ending the global pandemic. At least three COVID‐19 vaccines have been approved or are about to be approved for distribution in many countries. However, with very limited initial availability, only a minority of the population will be able to receive vaccines this winter. Urgent decisions will have to be made about who should receive priority for access. Current policy in the UK appears to take the view that those who are most vulnerable to COVID‐19 should get the vaccine first. While this is intuitively attractive, we argue that there are other possible values and criteria that need to be considered. These include both intrinsic and instrumental values. The former are numbers of lives saved, years of life saved, quality of the lives saved, quality‐adjusted life‐years (QALYs), and possibly others including age. Instrumental values include protecting healthcare systems and other broader societal interests, which might require prioritizing key worker status and having dependants. The challenge from an ethical point of view is to strike the right balance among these values. It also depends on effectiveness of different vaccines on different population groups and on modelling around cost‐effectiveness of different strategies. It is a mistake to simply assume that prioritizing the most vulnerable is the best strategy. Although that could end up being the best approach, whether it is or not requires careful ethical and empirical analysis.

Health Care Analysis, 2021

In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to m... more In the first wave of the COVID-19 pandemic, healthcare workers in some countries were forced to make distressing triaging decisions about which individual patients should receive potentially life-saving treatment. Much of the ethical discussion prompted by the pandemic has concerned which moral principles should ground our response to these individual triage questions. In this paper we aim to broaden the scope of this discussion by considering the ethics of broader structural allocation decisions raised by the COVID-19 pandemic. More specifically, we consider how nations ought to distribute a scarce life-saving resource across healthcare regions in a public health emergency, particularly in view of regional differences in projected need and existing capacity. We call this the regional triage question. Using the case study of ventilators in the COVID-19 pandemic, we show how the moral frameworks that we might adopt in response to individual triage decisions do not translate straightforwardly to this regional-level triage question. Having outlined what we take to be a plausible egalitarian approach to the regional triage question, we go on to propose a novel way of operationalising the 'save the most lives' principle in this context. We claim that the latter principle ought to take some precedence in the regional triage question, but also note important limitations to the extent of the influence that it should have in regional allocation decisions.

Bioethics, 2021

We argue that we should provide extra payment not only for extra time worked but also for the ext... more We argue that we should provide extra payment not only for extra time worked but also for the extra risks healthcare workers (and those working in healthcare settings) incur while caring for COVID‐19 patients—and more generally when caring for patients poses them at significantly higher risks than normal. We argue that the extra payment is warranted regardless of whether healthcare workers have a professional obligation to provide such risky healthcare. Payment for risk would meet four essential ethical requirements. First, assuming healthcare workers do not have a professional obligation to take on themselves the risks, payments in the form of incentives would preserve autonomy in deciding what risks to take on oneself. Second, even assuming that healthcare workers do have a professional obligation to take on themselves the risks, payments for risk would create fair working conditions by avoiding exploitation. Third, payments for risk would make it more likely that public healthcare systems can discharge their institutional responsibility to provide healthcare in circumstances where healthcare workers may otherwise (perhaps legitimately) opt out. Fourth, payments for risk would guarantee an efficient healthcare system in pandemic situations. Finally, we address two likely objections that some might raise against our proposal, particularly with regard to incentives, namely that such payments or incentives can themselves be coercive and that they represent a form of undue inducement.

Journal of Medical Ethics, 2020

Journal of Medical Ethics, 2021

The past few years have brought significant breakthroughs in understanding human genetics. This k... more The past few years have brought significant breakthroughs in understanding human genetics. This knowledge has been used to develop 'polygenic scores' (or 'polygenic risk scores') which provide probabilistic information about the development of polygenic conditions such as diabetes or schizophrenia. They are already being used in reproduction to select for embryos at lower risk of developing disease. Currently, the use of polygenic scores for embryo selection is subject to existing regulations concerning embryo testing and selection. Existing regulatory approaches include 'disease-based' models which limit embryo selection to avoiding disease characteristics (employed in various formats in Australia, the UK, Italy, Switzerland and France, among others), and 'laissez-faire' or 'libertarian' models, under which embryo testing and selection remain unregulated (as in the USA). We introduce a novel 'Welfarist Model' which limits embryo selection according to the impact of the predicted trait on well-being. We compare the strengths and weaknesses of each model as a way of regulating polygenic scores. Polygenic scores create the potential for existing embryo selection technologies to be used to select for a wider range of predicted genetically influenced characteristics including continuous traits. Indeed, polygenic scores exist to predict future intelligence, and there have been suggestions that they will be used to make predictions within the normal range in the USA in embryo selection. We examine how these three models would apply to the prediction of non-disease traits such as intelligence. The genetics of intelligence remains controversial both scientifically and ethically. This paper does not attempt to resolve these issues. However, as with many biomedical advances, an effective regulatory regime must be in place as soon as the technology is available. If there is no regulation in place, then the market effectively decides ethical issues.

Bioethics, 2020

One of the most commonly referenced ethical principles when it comes to the management of dying p... more One of the most commonly referenced ethical principles when it comes to the management of dying patients is the doctrine of double effect (DDE). The DDE affirms that it is acceptable to cause side effects (e.g. respiratory depression) as a consequence of symptom-focused treatment. Much discussion of the ethics of end of life care focuses on the question of whether actions (or omissions) would hasten (or cause) death, and whether that is permissible. However, there is a separate question about the permissibility of hastening or causing unconsciousness in dying patients. Some authors have argued that the DDE would not permit end of life care that directly aims to render the patient unconscious. The claim is that consciousness is an objective human good and therefore doctors should not intentionally (and permanently) suppress it.
Three types of end of life care (EOLC) practices will be explored in this article. The first is symptom-based management (e.g. analgesia); the second is proportional terminal sedation as a means of relieving suffering (also referred to as palliative sedation or continuous deep sedation); and finally, deliberate and rapid sedation to unconsciousness until death (a practice we call Terminal Anaesthesia in this paper). After examining the common arguments for the various types of symptom-based management and sedation, we apply the DDE to the latter two types of EOLC practices. We argue that aiming at unconsciousness, contrary to some claims, can be morally good or at least morally neutral in some dying patients.

Journal of Law and the Biosciences, 2020

When we have a vaccine against COVID-19, who should be vaccinated first? The question is relevant... more When we have a vaccine against COVID-19, who should be vaccinated first? The question is relevant because, initially, vaccine availability will likely be limited. After healthcare and some other essential workers, it might seem the most obvious candidates are the elderly and other groups that are more vulnerable to the virus. However, we argue that this is not necessarily the case. Protecting the most vulnerable might require prioritizing vaccinating children in order to maximize the benefits of indirect immunity for the elderly and the other vulnerable groups. Whether this will be the best strategy from a public health perspective will depend on characteristics of the vaccine and of the virus, which are currently unknown. Here, we assess this possibility from an ethical point of view, by drawing comparisons and analogies with the case of the flu vaccination and with other examples of health policies and practices. We conclude that there are strong ethical reasons to vaccinate the young to protect the old, provided that the risks imposed on children are reasonable, even if that implies using children as a means to protect the elderly and the vulnerable.

Journal of Medical Ethics, 2021

The UK government has put Lateral Flow Antigen Tests (LFATs) at the forefront of its strategy to ... more The UK government has put Lateral Flow Antigen Tests (LFATs) at the forefront of its strategy to scale up testing in the coronavirus pandemic. However, evidence from a pilot trial using an LFAT to identify asymptomatic infections in the community suggests that the test missed over half of the positive cases in the tested population. This raises the question of whether it can it be ethical to use an inaccurate test to guide public health measures. We begin by explicating different dimensions of test accuracy (sensitivity, specificity, and predictive value), and why they matter morally, before highlighting key data from the Liverpool pilot. We argue that the poor sensitivity of the LFAT in this pilot suggests that there are important limitations to what we can expect these tests to achieve. A test with low sensitivity will provide false negative results, and in doing so generate the risk of false assurance and its attendant moral costs. However, we also suggest that the deployment of an insensitive but specific test could identify many asymptomatic carriers of the virus who are currently being missed under existing arrangements. Having outlined ways in which the costs of false reassurance could potentially be mitigated, we conclude that the use of an insensitive LFAT in mass testing may be ethical if (i) it is used predominantly to identify positive cases (ii) it is a cost-effective method of achieving that goal and (iii) if other public health tools can effectively prevent widespread false reassurance.

Bioethics, 2021

Genetic engineering has been a topic of discussion for over 50 years, but only recently that has ... more Genetic engineering has been a topic of discussion for over 50 years, but only recently that has gene editing become a reality. CRISPR biotechnologies have made gene editing much safer, precise and overall feasible. We have witnessed the first cases of human germline genetic modification resulting in live births conducted by He Jiankui. In this paper, we will analyse He Jiankui´s case in relation to one of the most difficult problems in procreative ethics (or ethics of future generations): the non-identity problem. We believe this analysis will help us understand the ethics involved in gene editing and hopefully allow for a better, more philosophically grounded legislation on CRISPR and other gene editing technologies.

Ramon Llull Journal of Applied Ethics, 2020

In this paper we will discuss the status of gene editing technologies like CRISPR. We will examin... more In this paper we will discuss the status of gene editing technologies like CRISPR. We will examine whether this technology should be considered a form of enhancement, or if CRISPR is merely a medical technology analogous to many of the common medical interventions of today. The importance of this discussion arises from the enormous potential of CRISPR to increase human health and welfare. If we interrupt or delay its investigation and implementation based on misconceptions about its nature and consequences, we may fail to achieve great benefits. Clarifying what CRISPR is and how it compares to other medical procedures should create the right environment to discuss its development and introduction in society. We argue that gene editing is both a conventional medical technology and a potential human enhancer. It is important to separate these different applications. Just as in the cloning debate, it is possible to sort out therapeutic gene editing from enhancement gene editing in considering regulation or policy.

BMJ Open, 2020

Objective: As cases of COVID-19 infections surge, concerns have renewed about intensive care unit... more Objective: As cases of COVID-19 infections surge, concerns have renewed about intensive care units (ICU) being overwhelmed and the need for specific triage protocols over winter. This study aimed to help inform triage guidance by exploring the view of lay people about factors to include in triage decisions.
Design, setting and participants: Online survey between 29th May and 22nd June 2020 based on hypothetical triage dilemmas. Participants recruited from existing market research panels, representative of the UK general population. Scenarios were presented in which a single ventilator is available, and two patients require ICU admission and ventilation. Patients differed in one of: chance of survival, life expectancy, age, expected length of treatment, disability, and degree of frailty. Respondents were given the option of choosing one patient to treat, or tossing a coin to decide.
Results: Seven hundred and sixty-three participated. A majority of respondents prioritized patients who would have a higher chance of survival (72-93%), longer life expectancy (78-83%), required shorter duration of treatment (88-94%), were younger (71-79%), or had a lesser degree of frailty (60-69% all p< .001). Where there was a small difference between two patients, a larger proportion elected to toss a coin to decide which patient to treat. A majority (58-86%) were prepared to withdraw treatment from a patient in intensive care who had a lower chance of survival than another patient currently presenting with COVID-19. Respondents also indicated a willingness to give higher priority to healthcare workers and to patients with young children.
Conclusion: Members of the UK general public potentially support a broadly utilitarian approach to ICU triage in the face of overwhelming need. Survey respondents endorsed the relevance of patient factors currently included in triage guidance, but also factors not currently included. They supported the permissibility of reallocating treatment in a pandemic.

Journal of Medical Ethics, 2020

Mandatory vaccination, including for COVID-19, can be ethically justified if the threat to public... more Mandatory vaccination, including for COVID-19, can be ethically justified if the threat to public health is grave, the confidence in safety and effectiveness is high, the expected utility of mandatory vaccination is greater than the alternatives, and the penalties or costs for non-compliance are proportionate. I describe an algorithm for justified mandatory vaccination. Penalties or costs could include withholding of benefits, imposition of fines, provision of community service or loss of freedoms. I argue that under conditions of risk or perceived risk of a novel vaccination, a system of payment for risk in vaccination may be superior. I defend a payment model against various objections, including that it constitutes coercion and undermines solidarity. I argue that payment can be in cash or in kind, and opportunity for altruistic vaccinations can be preserved by offering people who have been vaccinated the opportunity to donate any cash payment back to the health service.

Clarke, S., Zohny, H. and Savulescu, J. (eds.) Rethinking Moral Status. Oxford, Oxford University Press, pp. 1-19., 2021

Recent technological developments and potential technological developments of the near future req... more Recent technological developments and potential technological developments of the near future require us to try to think clearly about what it is to have moral status and about when and why we should attribute moral status to beings and entities. What should we say about the moral status of human non-human chimeras, human brain organoids, artificial intelligence, cyborgs, post-humans, and human minds that have been uploaded into a computer, or onto the internet? In this introductory chapter, we survey some key assumptions ordinarily made about moral status that may require rethinking. These include the assumptions that all humans who are not severely cognitively impaired have equal moral status, that possession of the sophisticated cognitive capacities typical of human adults is necessary for full moral status, that only humans can have full moral status, and that there can be no beings with higher moral status than ordinary adult humans. We also need to consider how we should treat beings and entities when we find ourselves uncertain about their moral status.

Religion, Intolerance and Conflict: a Scientific and Conceptual Investigation, edited by Steve Clarke, Russell Powell and Julian Savulescu, Oxford, Oxford University Press, pp. 266-272., Jan 2013

Journal of Medical Ethics, 2020

In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing pube... more In this article, we analyse the novel case of Phoenix, a non-binary adult requesting ongoing puberty suppression (OPS) to permanently prevent the development of secondary sex characteristics, as a way of affirming their gender identity. We argue that (1) the aim of OPS is consistent with the proper goals of medicine to promote well-being, and therefore could ethically be offered to non-binary adults in principle; (2) there are additional equity-based reasons to offer OPS to non-binary adults as a group; and (3) the ethical defensibility of facilitating individual requests for OPS from non-binary adults also depends on other relevant considerations, including the balance of potential benefits over harms for that specific patient, and whether the patient's request is substantially autonomous. Although the broadly principlist ethical approach we take can be used to analyse other cases of non-binary adults requesting OPS apart from the case we evaluate, we highlight that the outcome will necessarily depend on the individual's context and values. However, such clinical provision of OPS should ideally be within the context of a properly designed research study with long-term follow-up and open publication of results.