Julian Savulescu

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.

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.

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).

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.

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.

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.

Antibiotic resistance is one of the most pressing public health problems humanity faces. Research into new classes of antibiotics and new kinds of treatments – including risky experimental treatments such as phage therapy and vaccines – is an important part of improving our ability to treat infectious diseases. In order to aid this research, we will argue that we should permit researchers to pay people any amount of money to compensate for the risks of participating in clinical trials, including ‘challenge studies’ that involve deliberately infecting patients. We think that standard worries about paying for participation in risky research are reducible to concerns that can be addressed with the right screening mechanisms.

In July 2018, the Nuffield Council of Bioethics released its long-awaited report on heritable genome editing (HGE). The Nuffield report was notable for finding that HGE could be morally permissible, even in cases of human enhancement. In this paper, we summarise the findings of the Nuffield Council report, critically examine the guiding principles they endorse and suggest ways in which the guiding principles could be strengthened. While we support the approach taken by the Nuffield Council, we argue that detailed consideration of the moral implications of genome editing yields much stronger conclusions than they draw. Rather than being merely ’morally permissible’, many instances of genome editing will be moral imperatives.

Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

In The Evolution of Moral Progress Allen Buchanan and Russell Powell advance an evolutionary explanation of moral progress by morality becoming more ‘inclusivist’. We are prepared to accept this explanation as far as it goes, but argue that it fails to explain how morality can become inclusivist in the fuller sense they intend. In fact, it even rules out inclusivism in their intended sense of moral progress, since they believe that human altruism and prosocial attitudes are essentially parochial. We also respond to their charge that the possibility of moral enhancement by biomedical means that we have defended in numerous publications assumes that moral attitudes are biologically hard‐wired to an extent that implies that they are resilient to the influence of cognitive or cultural factors. Quite the contrary, we think they are more open to such influence than they seem to do.

The precautionary principle aims to influence decision‐making in contexts where some activity poses uncertain but potentially grave threats. This perfectly describes the controversy surrounding germline gene editing. This article considers whether the precautionary principle should influence how we weigh the risks and benefits of human germline interventions, focusing especially on the possible threats to the health of future generations. We distinguish between several existing forms of the precautionary principle, assess their plausibility and consider their implications for the ethics of germline modification. We also offer a novel form of the precautionary principle: the sufficientarian precautionary principle. Some plausible versions of the precautionary principle recommend placing somewhat greater weight on avoiding threats to future generations than on achieving short‐term benefits. However, no plausible versions of the precautionary principle entail that we should outright reject the use germline gene editing in human reproduction and some, such as the sufficientarian version, might endorse its use.

The view that exertion of effort determines praiseworthiness for an achievement is implicit in 'no pain, no praise'-style objections to biomedical enhancement. On such views, if enhancements were to reduce the need for effort, agents would be less praiseworthy. Motivational enhancement would appear to be the most problematic in this respect, given that increased motivation reduces the need for agents to rally themselves and to exert effort in activity. We use the prospect of motivational enhancement to reexamine the grounds of praiseworthiness for achievements. We consider the place of effort amongst the grounds for praise, whether effort exhausts these grounds, and how they can be better specified. We argue that praiseworthiness depends on (i) the voluntariness and strength of the agent's committed pursuit of a valuable end (E), (ii) the costliness of the committed pursuit of E, and (iii) the value of E. Effort is just one cost amongst many, and costs of activities can be traded-off. Motivational enhancement reduces the praise due to an agent only when it reduces the net cost to the agent (without strengthening the voluntary commitment). We emphasize the importance of a diachronic perspective on active agency for praiseworthiness, to include training, prior planning, and deliberate strategies to overcome weakness of will, even where this reduces the need for effort.

In this article, we outline a novel approach to understanding the role of responsibility in health promotion. Efforts to tackle chronic disease have led to an emphasis on personal responsibility and the identification of ways in which people can ‘take responsibility’ for their health by avoiding risk factors such as smoking and over-eating. We argue that the extent to which agents can be considered responsible for their health-related behaviour is limited, and as such, state health promotion which assumes certain forms of moral responsibility should (in general) be avoided. This indicates that some approaches to health promotion ought not to be employed. We suggest, however, that another form of responsibility might be more appropriately identified. This is based on the claim that agents (in general) have prudential reasons to maintain their health, in order to pursue those things which make their lives go well—i.e. that maintenance of a certain level of health is (all-things-considered) rational for many agents, given their pleasures and plans. On this basis, we propose that agents have a self-regarding prudential responsibility to maintain their health. We outline the implications of a prudential responsibility approach to health promotion.

Background
The non-identity problem arises when our actions in the present could change which people will exist in the future, for better or worse. Is it morally better to improve the lives of specific future people, as compared to changing which people exist for the better? Affecting the timing of fetuses being conceived is one case where present actions change the identity of future people. This is relevant to questions of public health policy, as exemplified in some responses to the Zika epidemic. There is philosophical disagreement about the relevance of non-identity: some hold that non-identity is not relevant, while others think that the only morally relevant actions are those that affect specific people. Given this disagreement, we investigated the intuitions about the moral relevance of non-identity within an educated sample of the public, because there was previously little empirical data on the public’s views on the non-identity problem.

Methods
We performed an online survey with a sample of the educated general public. The survey assessed participants’ preferences between person-affecting and impersonal interventions for Zika, and their views on other non-identity thought experiments, once the non-identity problem had been explained. It aimed to directly measure the importance of non-identity in participants’ moral decision-making.

Results
We collected 763 valid responses from the survey. Half of the participants (50%) had a graduate degree, 47% had studied philosophy at a university level, and 20% had read about the non-identity problem before. Most participants favoured person-affecting interventions for Zika over impersonal ones, but the majority claimed that non-identity did not influence their decision (66% of those preferring person-affecting interventions, 95% of those preferring impersonal ones). In one non-identity thought experiment participants were divided, but in another they primarily answered that impersonally reducing the quality of life of future people would be wrong, harmful and blameworthy, even though no specific individuals would be worse off.

Conclusions
Non-identity appeared to play a minor role in participants’ moral decision-making. Moreover, participants seem to either misunderstand the non-identity problem, or hold non-counterfactual views of harm that do not define harm as making someone worse off than they would have been otherwise.

Imaging research regularly yields incidental findings that may have personal medical or reproductive decision‐making significance to study participants. It is widely assumed that researchers have a moral obligation to disclose at least some kinds of incidental findings to research participants. However, it is also a widely held view that researchers do not have a moral obligation to actively look for abnormalities irrelevant to the aims of their study. This paper challenges that assumption.

In vitro gametogenesis (IVG) might offer numerous research and clinical benefits. Some potential clinical applications of IVG, such as allowing opposite‐sex couples experiencing infertility to have genetically related children, have attracted support. Others, such as enabling same‐sex reproduction and solo reproduction, have attracted significantly more criticism. In this paper, we examine how different ethical principles might help us to draw lines and distinguish between ethically desirable and undesirable uses of IVG. We discuss the alleged distinction between therapeutic and non‐therapeutic uses of assisted reproduction in the context of IVG, and show how it is both problematic to apply in practice and theoretically dubious. We then discuss how the ethical principles of reproductive justice and beneficence apply to IVG for opposite‐sex reproduction, same‐sex reproduction, and solo reproduction. We suggest that these principles generate strong reasons for the use of IVG for opposite‐sex and same‐sex reproduction, but not for solo reproduction.

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.

Non-invasive prenatal testing (NIPT) can determine the sex of the fetus very accurately and very early in gestation. There are concerns that the ease, timing, and accuracy of NIPT sex determination will facilitate sex-selective termination of pregnancy (TOP). Here, we review current practices, the evidence for a link between NIPT and sex-selective TOP, and associated ethical issues. Sex-selective TOP, usually motivated by son preference, has had serious demographic consequences in countries such as India and China. Currently, ultrasound is the primary method by which parents determine the sex of the fetus. The diffusion of ultrasound technology has had a direct impact on the rates of sex-selective TOP. Although NIPT is currently more costly, it is feasible that increased uptake of this technology could have a similar effect. Partly because NIPT is a relatively recent development in prenatal screening, there is little data on the impact of NIPT on sex selection practices. Evidence that NIPT is playing a role in sex-selective TOP remains largely anecdotal. Further research is required to assess and quantify TOP resulting from NIPT sex determination. The use of these technologies for sex selection raises a number of ethical issues, in addition to practical demographic consequences.

We argue that, from the point of view public health ethics, vaccination is significantly analogous to seat belt use in motor vehicles and that coercive vaccination policies are ethically justified for the same reasons why coercive seat belt laws are ethically justified. We start by taking seriously the small risk of vaccines' side effects and the fact that such risks might need to be coercively imposed on individuals. If millions of individuals are vaccinated, even a very small risk of serious side effects implies that, statistically, at some point side effects will occur. Imposing such risks raises issues about individual freedom to decide what risks to take on oneself or on one's children and about attribution of responsibility in case of adverse side effects. Seat belt requirements raise many of the same ethical issues as vaccination requirements, and seat belt laws initially encountered some opposition from the public that is very similar to some of the current opposition to vaccine mandates. The analogy suggests that the risks of vaccines do not constitute strong enough reasons against coercive vaccination policies and that the same reasons that justify compulsory seat belt use-a measure now widely accepted and endorsed-also justify coercive vaccination policies.

Here, a moral case is presented as to why sign languages such as Auslan should be made compulsory in general school curricula. Firstly, there are significant benefits that accrue to individuals from learning sign language. Secondly, sign language education is a matter of justice; the normalisation of sign language education and use would particularly benefit marginalised groups, such as those living with a communication disability. Finally, the integration of sign languages into the curricula would enable the flourishing of Deaf culture and go some way to resolving the tensions that have arisen from the promotion of oralist education facilitated by technologies such as cochlear implants. There are important reasons to further pursue policy proposals regarding the prioritisation of sign language in school curricula.

Conflict of interest (COI) in medicine is typically taken to be financial in nature: it is often assumed that a COI occurs when a health care practitioner's financial interest conflicts with a patients' interests, the public interest, or professional obligations more generally. Even when non-financial COI is acknowledged, ethical concerns are almost exclusively reserved for financial COI. However, the notion of 'interests' cannot be reduced to the solely financial. Individuals in general, and medical professionals in particular, have different types of 'interests', many of which are non-financial in nature but can still conflict with professional obligations. The debate about how COI influences decision-making in health care delivery and policy has largely overlooked this broader notion of 'interests'. Here, we will focus on health practitioners' moral or religious values as particular types of personal interests involved in health care delivery that can generate COI, and on conscientious objection in health care as a form of management of that COI. We argue that this is an inappropriate way to manage COI, and that in the health care context, COI generated by an individual's conscience should be managed in such a way as to reassure patients that professional judgement has not been and will not be affected by conflicts, in line with management of financial COIs.

Recent research has begun treating the perennial philosophical question, “what makes a person the same over time?” as an empirical question. A long tradition in philosophy holds that psychological continuity and connectedness of memories are at the heart of personal identity. More recent experimental work, following Strohminger & Nichols (2014), has suggested that persistence of moral character, more than memories, is perceived as essential for personal identity. While there is a growing body of evidence supporting these findings, a critique by Starmans & Bloom (2018) suggests that this research program conflates personal identity with mere similarity. To address this criticism, we explore how loss of someone’s morality or memories influence perceptions of identity change, and perceptions of moral duties towards the target of the change. We present participants with a classic ‘body switch’ thought experiment and after assessing perceptions of identity persistence, we present a moral dilemma, asking participants to imagine that one of the patients must die (Study 1) or be left alone in a care home for the rest of their life (Study 2). Our results highlight the importance of the continuity of moral character, suggesting lay intuitions are tracking (something like) personal identity, not just mere similarity.

Should non-experts defer to epidemiologists with regard to the response to the coronavirus pandemic? We argue that deference is required with regard to settled science: non-experts (that is, people who may possess expertise of their own but whose expertise is not relevant to a particular question) ought to defer with regard to climate science and the efficacy of vaccines. However, we suggest that this deference is warranted because these questions have been appropriately probed many times by many different kinds of people. While non-experts should defer to epidemiologists with regard to matters within the sphere of epidemiology specifically, responding to the pandemic requires expertise from many fields. We best build a consensus worth deferring to by contributing our expertise now. Ethicists and philosophers are not epistemically arrogant if they question policy responses. Rather, they play a responsible role in building a reliable consensus.

While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients. We conducted semi-structured interviews with 31 GHPs across Europe, Australia and Canada to identify some of these challenges.

Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing. These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realising, as far as possible, the underlying goals that informed consent is meant to promote. While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients. We conducted semi-structured interviews with 31 GHPs across Europe, Australia and Canada to identify some of these challenges.

Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing. These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realising, as far as possible, the underlying goals that informed consent is meant to promote.