In recent years, the issue of accepting a higher cost per health improvement for orphan drugs has been the subject of discussion in health care policy agencies and the academic literature. This article aims to provide an analysis of broadly egalitarian arguments for and against accepting higher costs per health improvement. More specifically, we aim to investigate which arguments one should agree upon putting aside and where further explorations are needed. We identify three kinds of arguments in the literature: considerations (...) of substantial equality, formal equality, and opportunity cost. We argue that considerations of substantial equality do not support higher costs per health improvement orphan drugs, even if such considerations are considered valid. On the contrary, arguments of formal equality may support accepting a higher cost per health improvement for orphan drugs. However, in order to do so, a number of both normative and empirical issues must be resolved; these issues are identified in the article. For instance, it must be settled to what extent the opportunity cost in terms of foregone health for other patients is acceptable in order to uphold formal equality. We conclude that certain arguments can be set aside, and future focus should be put on the unresolved normative and empirical issues related to formal equality and opportunity cost. (shrink)

Community engagement is increasingly defended as an ethical requirement for biomedical research. Some forms of community engagement involve asking the consent of community leaders prior to seeking informed consent from community members. Although community consent does not replace individual consent, it could problematically restrict the autonomy of community members by precluding them from research when community leaders withhold their permission. Community consent is therefore at odds with one of the central principles of bioethics: respecting autonomy. This raises the question as (...) to how community consent can be justified or even required. This paper aims to provide an answer to this question by arguing, based on the work of Taylor and Kymlicka, that community practices are important for the identity and autonomy of community members. When these practices are incompatible with a solitary focus on individual informed consent, they need to be protected by making these decision‐making practices (including asking permission to community authorities) part of the consent process. Since these decision‐making practices are important for the autonomy of community members, community consent with the goal of protecting these practices is not necessarily in conflict with autonomy. (shrink)

In his ‘The Identity Objection to the future‐like‐ours argument’, Brill argues that Marquis's 'future of value' account of the wrong of abortion is still vulnerable to the identity objection—the claim that the foetus and the later person are not numerically identical, so the later person's valuable experiences are not the foetus's future experiences—even if it is conceded that the future organism, as well as the person, has experiences. This is because the organism has these experiences in a different way from (...) the person. The person has them directly, and the organism has them only derivatively. This implies, he maintains, that the organism cannot be deprived of those experiences in a way that is wrong. Only the person can be deprived in this morally relevant way. But, I argue, if the organism genuinely has those experiences, it is not at all clear why its being deprived of them would be permissible. I argue that the reason why Brill can claim that having those experiences derivatively makes this moral difference is because the sense in which the organism has experiences is not a genuine sense. But that is a problem for this theory of personal identity, not for Marquis's account of the wrong of abortion. I also argue that supposing that one cannot morally harm the human organism has various implausible implications, which cast doubt on the idea that having experiences derivatively means that the organism is not morally harmed by being deprived of them. (shrink)

Disconnecting a patient from artificial life support, on their request, is often if not always a matter of letting them die, not killing them—and sometimes, permissibly doing so. Stopping a patient’s heart on request, by contrast, is a kind of killing, and rarely if ever a permissible one. The difference seems to be that procedures of the first kind remove an unwanted external support for bodily functioning, rather than intervening in the body itself. What should we say, however, about cases (...) at the boundary—procedures involving items that seem bodily in some respects, but not others? When, for instance, does deactivating an implanted device like a pacemaker count as killing, and when as letting die? Contra existing proposals, I argue that the boundaries of the body for this purpose are not drawn at the boundaries of the self, or (if this is different) the human organism. Nor should we determine when we are killing and when we are letting die by deferring to existing practices for distinguishing ongoing from completed treatment. Rather, I argue that whether something (organic or inorganic) counts as body part for purposes of this distinction depends on the results of a normative analysis of the particular character of our rights in it—particularly, whether and in what way these rights ought to be alienable. I conclude by arguing that there are likely good reasons to recognize distinctively “bodily” rights and restrictions in at least some implantable devices. (shrink)

Assuming that moral enhancement is morally permissible, I contend that a more careful theoretical treatment of emotion and the affective landscape is needed to advance both our understanding and the prospects of interventions aimed at moral enhancement. Using Douglas’ proposal for the direct modulation of counter‐moral emotions as a foil for discussion, I argue that the direct modulation of emotion fails to address underlying aspects of an agent’s psychology that will give rise to a range of counter‐moral motives beyond the (...) emotion that is targeted. This is because the direct modulation of emotion does not accommodate the fact that an emotional episode or emotional disposition is part of a network of other dispositions and responses, against a backdrop of our having cares and goals, as well as other cognitive content that can mediate how we apprehend a situation. By focusing on emotion rather than on moral capacity as other critiques have done, I thus argue that direct modulation is likely to be ineffective, and, more positively, by drawing out patterns of connections across the affective landscape, we can better tease out what it is that we should really be targeting if we are to achieve robust and meaningful moral change. (shrink)

The devastating impact of the COVID‐19 (coronavirus disease 2019) pandemic is prompting renewed scrutiny of practices that heighten the risk of infectious disease. One such practice is refusing available vaccines known to be effective at preventing dangerous communicable diseases. For reasons of preventing individual harm, avoiding complicity in collective harm, and fairness, there is a growing consensus among ethicists that individuals have a duty to get vaccinated. I argue that these same grounds establish an analogous duty to avoid buying and (...) eating most meat sold today, based solely on a concern for human welfare. Meat consumption is a leading driver of infectious disease. Wildlife sales at wet markets, bushmeat hunting, and concentrated animal feeding operations (CAFOs) are all exceptionally risky activities that facilitate disease spread and impose immense harms on human populations. If there is a moral duty to vaccinate, we also should recognize a moral duty to avoid most meat. The paper concludes by considering the implications of this duty for policy. (shrink)

A grandfather clause is a provision whereby an old rule continues to apply to some existing situation while a new rule applies to all future cases. This paper focuses on the use of grandfather clauses in health technology appraisals (HTAs) issued by the National Institute for Health and Care Excellence (NICE) in the United Kingdom. NICE provides evidence‐based guidance on healthcare technologies and public health interventions that influence resource allocation decisions in the National Health Service (NHS) and the broader public (...) sector in England and Wales. In this context, a grandfather clause is included when NICE does not recommend treatment with a given technology. The grandfather clause provides an exemption from the general recommendation for patients who have already started treatment with the technology in question, before the publication of the NICE guidance. In this paper we first lay out the contexts in which grandfather clauses occur in NICE guidance, and then consider ethical arguments against and in support of grandfather clauses and the continuation of treatment. We argue that NICE’s current practice of automatic inclusion of a grandfather clause is ethically problematic and unfair. While the inclusion of a grandfather clause may be appropriate and justified in specific cases, we argue that inclusion of such a clause should be considered as part and parcel of the decision making process on a case by case basis, rather than adopted as the default. (shrink)

The neurodiversity paradigm is presented by its proponents as providing a philosophical foundation for the activism of the neurodiversity movement. Its central claims are that autism and other neurodivergent conditions are not disorders because they are not intrinsically harmful, and that they are valuable, natural and/or normal parts of human neurocognitive variation. This paper: (a) identifies the non‐disorder claim as the most central of these, based on its prominence in the literature and connections with the practical policy claims that the (...) paradigm is supposed to support; (b) describes the heterogeneity of autism at the behavioural and causal levels, and argues that at the behavioural level this encompasses ways of being autistic that are harmful in ways that cannot be not wholly attributed to discrimination or unjust social arrangements, challenging the claim that autism is not a disorder; (c) considers and rejects responses to this challenge based on separation of high‐ and low‐functioning autism, separation of autism from co‐occurring conditions, and viewing autism as part of an individual’s identity. Two of these responses fail for reasons that are themselves connected with the behavioural and/or causal heterogeneity of autism. (shrink)

The use of voluntary assisted dying as an end‐of‐life option has stimulated concerns and debates over the past decades. Although public attitudes towards voluntary assisted dying (including euthanasia and physician‐assisted suicide) are well researched, there has been relatively little study of the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. Using a mix of computational textual mining techniques, keyword study and qualitative thematic coding to analyse public submissions to (...) a parliamentary inquiry into voluntary assisted dying in Australia, this study critically examines the different reasons, normative reasoning and rhetorical strategies that people invoke in supporting or contesting voluntary assisted dying in everyday life. The analysis identified complex and potentially contradictory ethical principles being invoked on both sides of the debate. These findings deepen our understanding of the moral basis of public reasoning about end‐of‐life matters and will help to inform future discussions on policy and law reform. The findings underscore the importance of sound normative reasoning and the use of caution when interpreting opinion polls to inform policy. (shrink)

In the debates regarding the ethics of human enhancement, proponents have found it difficult to refute the concern, voiced by certain bioconservatives, that cognitive enhancement violates the autonomy of the enhanced. However, G. Owen Schaefer, Guy Kahane and Julian Savulescu have attempted not only to avoid autonomy-based bioconservative objections, but to argue that cognition-enhancing biomedical interventions can actually enhance autonomy. In response, this paper has two aims: firstly, to explore the limits of their argument; secondly, and more importantly, to develop (...) a more complete understanding of autonomy and its relation to cognitive enhancement. By drawing a distinction between the capacity for autonomy and the exercise and achievement of autonomy and by exploring the possible effects of cognitive enhancement on both competence and authenticity conditions for autonomy, the paper identifies and explains which dimensions of autonomy can and cannot, in principle, be enhanced via direct cognitive interventions. This allows us to draw conclusions regarding the limits of cognitive enhancement as a means for enhancing autonomy. (shrink)

The late Robert Veatch, one of the United States’ founders of bioethics, never tired of reminding us that the paradigm-shifting contribution that bioethics made to patient care was to liberate patients out of the hands of doctors, who were traditionally seen to know best, even when they decidedly did not know best. It seems to us that with the advent of COVID-19, health policy has come full-circle on this. COVID-19 gave rise to a large number of purportedly “ethical” guidance documents (...) aiming to assist health care providers and practitioners with responding to the ethical challenges that might arise in their response to the pandemic. Ethics has two primary functions: provide clear action guidance, and provide clear action justification. The documents in question arguably reflect the ultimate policy triumph of bioethical “principlism”, and, perhaps surprisingly, as a corollary, the ultimate triumph of “doctor-knows-best”. (shrink)

New discoveries are improving the odds of human cells surviving in host animals, prompting regulatory and funding agencies to issue calls for additional layers of ethical oversight for certain types of human–animal chimeras. Of interest are research proposals involving chimeric animals with humanized brains. But what is motivating the demand for additional oversight? I locate two, not obviously compatible, motivations, each of which provides the justificatory basis for paying special attention to different sets of human–animal chimeras. Surprisingly, the sets of (...) animals that actually get flagged for special scrutiny by research and funding guidelines do not correlate with either of the sets of animals that arise when we think about what is motivating additional oversight. What this shows is that existing research policies and funding guidelines are disconnected from their motivation: the rationale for flagging certain types of human–animal chimeras as requiring special oversight is ignored in execution. (shrink)

It is natural to think that there is a tight connection between whether someone is responsible for some outcome and whether it is appropriate to hold her accountable for that outcome. And this natural thought naturally extends to health: if someone is responsible for her health, then, all else being equal, she is accountable for it. Given this, some have thought that responsibility for health has an important role to play in distributing the benefits and burdens of healthcare. But there (...) is a reason for caution. That health is influenced by social, economic, and environmental factors is a matter of consensus. And some have argued that in light of these social determinants of health, individuals are not typically responsible for their health, rendering inappropriate policies that employ a responsibility‐for‐health criterion. This debate implicates a number of overlapping concepts and questions that are often difficult to pull apart. And I worry that those who maintain that social determinants undermine responsibility for health have latched on to the wrong target. The social determinants of health are relevant to such policies, but, I argue, not by globally undermining responsibility. Rather, social determinants are sometimes responsibility‐undermining, sometimes responsibility‐preserving, and often relevant to whether we should hold individuals accountable for their health regardless of their responsibility. This calls for a more nuanced appraisal of the ways in which the social determinants of health are relevant to such policies. And here I attempt to provide one. (shrink)

Pro-life advocates commonly argue that fetuses have the moral status of persons, and an accompanying right to life, a view most pro-choice advocates deny. A difficulty for this pro-life position has been Judith Jarvis Thomson’s violinist analogy, in which she argues that even if the fetus is a person, abortion is often permissible because a pregnant woman is not obliged to continue to offer her body as life support. Here, we outline the moral theories underlying public health ethics, and examine (...) the COVID-19 pandemic as an example of public health considerations overriding individual rights. We argue that if fetuses are regarded as persons, then abortion is of such prevalence in society that it also constitutes a significant public health crisis. We show that on public health considerations, we are justified in overriding individual rights to bodily autonomy by prohibiting abortion. We conclude that in a society that values public health, abortion can only be tolerated if fetuses are not regarded as persons. (shrink)

Assisted reproductive technologies have greatly increased our control over reproductive choices, leading some bioethicists to argue that we face unprecedented moral obligations towards progeny. Several models attempting to balance the principle of procreative autonomy with these obligations have been proposed. The least demanding is the minimal threshold model (MTM), according to which every reproductive choice is permissible, except creating children whose lives will not be worth living. Hence, as long as the future child is likely to have a life worth (...) living, prospective parents may be allowed to use preimplantation genetic diagnosis (PGD) to select embryos with genetic diseases or disabilities. Assuming a consequentialist person‐affecting view of morality, this paper investigates whether the MTM is an appropriate tool to guide procreative decisions given the continuous development of reproductive genetic technologies. In particular, I consider germline genome editing (GGE) and I argue that its application in human reproduction, unlike PGD, should be conceived as person‐affecting towards future progeny. I claim that even if we assume the plausibility of the MTM within PGD, we are committed to accepting that a greater moral obligation towards progeny should guide procreative decisions if GGE were available. In this case, the MTM should no longer be considered an appropriate instrument to guide procreative choices. Finally, I investigate when we face this greater moral obligation, concluding that it applies only when prospective parents have already engaged in the in vitro fertilization process. (shrink)