The National Institute for Health and Care Excellence, the UK’s main healthcare priority-setting body, recently reaffirmed a longstanding claim that in recommending technologies to the National Health Service it cannot apply the ‘rule of rescue’. This paper explores this claim by identifying key characteristics of the rule and establishing to what extent these are also features of NICE’s approach to evaluating ultra-orphan drugs through its highly specialised technologies programme. It argues that although NICE in all likelihood does not act because (...) of the rule in prioritising these drugs, its actions in relation to HSTs are nevertheless in accordance with the rule and are not explained by the full articulation of any alternative set of rationales. That is, though NICE implies that its approach to HSTs is not motivated by the rule of rescue, it is not explicit about what else might justify this approach given NICE’s general concern with overall population need and value for money. As such, given NICE’s reliance on notions of procedural justice and its commitment to making the reasons for its priority-setting decisions public, the paper concludes that NICE’s claim to reject the rule is unhelpful and that NICE does not currently meet its own definition of a fair and transparent decision-maker. (shrink)

This article is about the justifiability of accepting worse cost effectiveness for orphan drugs, that is, treatments for rare diseases, in a publicly financed health care system. Recently, three arguments have been presented that may be used in favour of exceptionally advantageous economic terms for orphan drugs. These arguments share the common feature of all referring to considerations of justice or fairness: the argument of the irrelevance of group size, the argument from the principle of need, and the argument of (...) identifiability. It is argued that all of these arguments fail to support the conclusion that orphan drugs should be subsidized to a larger extent than treatments for common diseases. The argument of the irrelevance fails to distinguish between directly and indirectly relevant considerations of fairness or justice. The recent attempt to revive the moral relevance of identifiability has provided no novel reasons to think that identifiability is morally relevant in itself or due to considerations of fairness and justice. The argument from the principle of need does not fail due to any inherent flaw in the principle as such. Rather, this principle can be interpreted in different ways, and none of these interpretations support exceptionally advantageous terms economically for treating rare diseases specifically. It is concluded that we are awaiting justice based reasons for the preferential treatment of orphan drugs. (shrink)

In February 2016, the Institute of Medicine released a report, commissioned by the United States Food and Drug Administration, on the ethical and social‐policy implications of so‐called three‐parent in vitro fertilization. The IOM endorses commencement of clinical trials on three‐parent IVF, subject to some initial limitations. Also called mitochondrial replacement or transfer, three‐parent IVF is an intervention comprising two distinct procedures in which the genetic materials of three people—the DNA of the father and mother and the mitochondrial DNA of an (...) egg donor—can be used to create a child. Three‐parent IVF would enable a woman with mitochondrial disease to have a genetically related child without transmitting the disease to the child. The possibility for three‐parent children has prompted criticism from many corners. Critics have pointed to ethical issues including safety concerns and risks to children, genetic and germline engineering concerns, the potential exploitation of the third‐parent egg donor, donor anonymity and privacy, and objections to creating babies with three parents, which undermines natural and traditional conceptions of procreation. Additionally, developing the technology would involve experimenting on, manipulating, and disposing of embryos. Although the IOM report considers the ethical concerns about the value of the three‐parent IVF technology, the IOM failed to give due attention to an important objection to the development of this technology: three‐parent IVF lacks the social value necessary to make investment of public resources in it ethical.Unlike the other concerns, this objection is not based on conservativism about new reproductive technologies or default favoritism of the status quo. I argue that the technology does not meet a plausible social value standard to render public research investment into its development ethical. Proponents of three‐parent IVF make inaccurate and exaggerated claims that it will eradicate mitochondrial disease and save lives. Were these claims true, proponents would have a strong case for the social value of the technology. But three‐parent IVF alone will not eradicate mitochondrial disease, and it will not save lives. Rather, it can create healthy lives. As I discuss, the moral distinction is crucial. Most importantly, investment in three‐parent IVF comes at the opportunity cost of researching treatment for mitochondrial disease that would benefit actual, living disease sufferers. (shrink)

In this paper, we bring together Foucault's biography and oeuvre to explore key concepts that support the analysis of nurses' acts of resistance. Foucault reflected on the power relations taking place in health services, making his contribution especially useful for the analysis of resistance in this context. Over three decades, he proposed a nonnormative philosophy while concomitantly engaging in transgressive practices guided by values such as human rights and social justice. Hence, Foucault's philosophy and public activism are an apparent contradiction, (...) but we argue that when analysed together they allow for a different understanding of his work. We describe the evolution of the concept of resistance in Foucault's work, supported by the approaches of Brent Picket (1996) and Miguel Morey (2013). Foucault started his work considering the idea of transgressiveness as it connects to being at the margins of society. He then spent considerable time elaborating the concept of power and identifying resistance strategies as forms of power exercise. In doing so, he considered that people engage with social change from multiple positions, including limited desire for change, fomenting reforms, or engaging in everyday revolutionary acts. As he further elaborated on power relations and defined resistance, Foucault asserted that resistance involves both repressive and productive dimensions of power, governance of biological life, state governance, and deliberate practices of illegalisms. Finally, Foucault shifted his attention to the freedom of ethical subjects, proposing the use of counter‐conduct and counter‐discourses to speak truth against oppression. Such framework offers a comprehensive lens for analysing nurses' acts of resistance within the complexities of the healthcare system and in society. In summary, Foucault's conceptual framework on resistance expands the role of nurses, to understand them not only as caregivers, but also as political agents capable of confronting and transforming oppressive institutional practices. (shrink)

In this issue, Lynch and colleagues discuss lessons learned from the “Operation Warp Speed” response to the COVID-19 pandemic in the United States—both about what to do and what not to do fo...

The Covid-19 pandemic has led to a health crisis of a scale unprecedented in post-war Europe. In response, a large amount of healthcare resources have been redirected to Covid-19 preventive measures, for instance population-wide vaccination campaigns, large-scale SARS-CoV-2 testing, and the large-scale distribution of protective equipment to high-risk groups and hospitals and nursing homes. Despite the importance of these measures in epidemiological and economic terms, health economists and medical ethicists have been relatively silent about the ethical rationales underlying the large-scale (...) allocation of healthcare resources to these measures. The present paper seeks to encourage this debate by demonstrating how the resource allocation to Covid-19 preventive measures can be understood through the paradigm of the Rule of Rescue, without claiming that the Rule of Rescue is the sole rationale of resource allocation in the Covid-19 pandemic. (shrink)

I consider various principles which might explain our intuitive obligation to rescue people from imminent death at great cost, even when the same resources could produce more benefit elsewhere. Our obligation to rescue is commonly explained in terms of the identifiability of the rescuee, but I reject this account. Instead, I offer two considerations which may come into play. Firstly, I explain the seeming importance of identifiability in terms of an intuitive obligation to prioritise life-extending interventions for people who face (...) a high risk of an early death, and I explain this in turn with a fair innings-style principle which prioritises life-extending interventions for people expected to die young. However, this account is incomplete. It does not explain why we would devote the same resources to rescuing miners stuck down a mine even if they are elderly. We are averse to letting people die suddenly, or separated from friends and family. And so, secondly, I give a new account that explains this in terms of narrative considerations. We value life stories that follow certain patterns, classic patterns which are reflected in many popular myths and stories. We are particularly averse to depriving people of the opportunity to follow some such pattern as they approach death. This means allowing them to sort out their affairs, say goodbyes to family and friends, review their life, or come to terms with death itself. Such activities carry a lot of meaning as ways of closing our life story in the right way. So, for someone who has not been given much notice of their death, an extra month is worth much more than for other patients. Finally, I review the UK National Health Service's end of life premium, which gives priority to patients with short life expectancy. I suggest it falls short in terms of such considerations. For example, the NHS defines its timings in terms of how long the patient can expect to live as at the time of the treatment decision, whereas the timings should be specified in terms of time from diagnosis. (shrink)