Building on work by Peterman, Aas, and Wasserman (2021), we modify their prospective benefit analysis to include only medically-relevant information about patients as persons without reference to their broader lives. Because patients (not their lives) must be treated equally, we argue that patients are the appropriate targets of allocative justification. We go on to challenge some of our current data-collection practices on this basis.

In financial disputes involving research, the parties are traditionally individual researchers and their institutions, biotech and pharmaceutical companies, and other entities engaged in the commercial development of biomedical research. Occasionally, research subjects claim that researchers have misled them or misappropriated their biological materials to derive financial gain. The best known example is the case of Moore v. Regents of the University of California, decided in 1990.With new developments in genomics, large-scale repositories of tissue and other biological specimens are increasingly important. (...) Biobanks have been established by various researchers, commercial entities, health-care institutions, and even entire countries. Individuals who contribute specimens almost always retain no commercial interest in any resulting research and language to that effect is now customarily included in informed consent documents signed at the time the specimen is given. Suppose, however, that the research subjects actually collect the specimens themselves, recruit the researcher, and provide financial support for the research. (shrink)

The global Covid-19 crisis raises at least three moral questions, which my contribution answers as follows: (1) Which patient should get treatment according to triage criteria? The patient whose treatment has the best prospect of success. (2) How should we resolve the conflict between public health measures and economic needs? Public health should have priority, but reaches its limits where the individual right to stay afloat through one’s own work is violated. (3) How should we resolve the conflict between public (...) health measures and civil liberties? Public health should have priority, but reaches its limits where the restriction of freedom violates the integrity of individual health and personal freedom. The answers and the arguments behind these are developed through the discussion of a wide range of current public health policies, concrete measures, and competing approaches to moral questions in the Covid-19 pandemic. (shrink)

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because of inadequate resources has (...) seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (shrink)

Background The world is threatened by future pandemics. Vaccines can play a key role in preventing harm, but there will inevitably be shortages because there is no possibility of advance stockpiling. We therefore need some method of prioritising access. Main text This paper reports a critical interpretative review of the published literature that discusses ethical arguments used to justify how we could prioritise vaccine during an influenza pandemic. We found that the focus of the literature was often on proposing different (...) groups as priorities. Different reasons were often suggested as a means of justifying such priority groupings. We suggest that much of the literature, wrongly, assumes that we are able to plan priority groups prior to the time of a particular pandemic and development of a particular vaccine. We also point out the surprising absence of various issues from the literature. Conclusions The literature proposes a wide range of ways to prioritise vaccines, focusing on different groups and ‘principles’. Any plan to use pandemic vaccine must provide justifications for its prioritisation. The focus of this review was influenza pandemic vaccines, but lessons can be learnt for future allocations of coronavirus vaccine, if one becomes available. (shrink)

In early 2020, a number of countries developed and published intensive care triage guidelines for the pandemic. Several of those guidelines, especially in the UK, encouraged the explicit assessment...

Ethical analyses, professional guidelines and legal decisions support the equivalence thesis for life-sustaining treatment: if it is ethical to withhold treatment, it would be ethical to withdraw the same treatment. In this paper we explore reasons why the majority of medical professionals disagree with the conclusions of ethical analysis. Resource allocation is considered by clinicians to be a legitimate reason to withhold but not to withdraw intensive care treatment. We analyse five arguments in favour of non-equivalence, and find only relatively (...) weak reasons to restrict rationing to withholding treatment. On the contrary, resource allocation provides a strong argument in favour of equivalence: non-equivalence causes preventable death in critically ill patients. We outline two proposals for increasing equivalence in practice: (1) reduction of the mortality threshold for treatment withdrawal, (2) time-limited trials of intensive care. These strategies would help to move practice towards more rational treatment limitation decisions. (shrink)

The dominant rule of economic evaluation within health care posits that resources are distributed in order to maximize health benefit. There are instances, however, where the public has demonstrated that they do not prefer such an allocation scheme, particularly in the context of life-saving interventions. Objectives Deviations from preferences of maximizing health benefit have important implications on both financial and distributive levels. This study sought to specify the circumstances in which respondent preferences are inconsistent with maximizing health benefit. Methods Ninety (...) respondents recruited from the London School of Economics and Political Science completed a questionnaire comprised of a series of paired profiles involving various combinations of life-saving or quality-of-life enhancing interventions. Results The results indicate that saving a life holds value beyond that captured by traditional health benefit measurement and that the value of saving a life is not consistent across ages. More specifically, the value of saving a life was age-dependent and markedly attenuated for older-age patients. Conclusions Many respondents were willing to overlook maximizing health benefit in order to rescue a life in immediate peril, and showed a diminished sense of moral imperative to rescue older-age patients. In light of difficulties related to the implementation of larger-scale policies incorporating Rule of Rescue concerns, the most realistic approaches will likely involve adopting smaller-scale policies that address issues such as do not resuscitate and living wills. Potential policy solutions such as age or monetary thresholds for life-saving interventions may be favoured in a research context; however, their overall social feasibility is questionable. (shrink)

One of the strongest objections to the development and use of substantially life-extending interventions is that they would exacerbate existing unjust disparities of healthy lifespans between rich and poor members of society. In both popular opinion and ethical theory, this consequence is sometimes thought to justify a ban on life-prolonging technologies. However, the practical and ethical drawbacks of banning receive little attention, and the viability of alternative policies is seldom considered. Moreover, where ethicists do propose alternatives, there is scant effort (...) to consider their merits in light of developing world priorities. In response to these shortcomings, I distinguish four policy options and, on the basis of a plausible intuition about fairness, evaluate their implications for a fair distribution of healthy lifespans. I claim that even in developing nations it would be fairest to favor policies that promote equal access to at least one promising category of substantially life-extending intervention: calorie restriction mimetics. (shrink)

African ethical theories tend to hold that moral agents ought to be partial, in the sense that they should favour members of their family or close community. This is considered an advantage over the impartiality of many Western moral theories, which are regarded as having counterintuitive implications, such as the idea that it is unethical to save a family member before a stranger. The partiality of African ethics is thought to be particularly valuable in the context of bioethics. Thaddeus Metz, (...) in particular, argues that his African-derived theory best accounts for a number of plausible intuitions, such as the intuition that health care practitioners ought to be biased towards the patients for whom they are directly responsible. In this article, I claim that the plausible intuitions drawn on in favour of partiality can be satisfactorily explained on the basis of impartial moral theories. Moreover, I argue that blanket acceptance of partiality has problematic consequences for distributive justice in resource allocation in biomedical contexts. By contrast, impartial theories can justify plausible instances of partiality whilst avoiding the pitfalls of fully partial moral theories. Although this provides grounds for abandoning partiality in principle, I claim that this finding should not be seen as damaging to African medical ethics. Instead, it prompts investigation of underexplored possibilities of impartial African moral theories. To demonstrate the value of this direction, I sketch some novel and attractive conceptions that combine impartiality with elements of African ethics. (shrink)

Drawing on Ezekiel Emanuel’s controversial piece ‘Why I hope to die at 75,’ I distinguish two types of concern in ethical debates about extending the human lifespan. The first focusses on the value of living longer from prudential and social perspectives. The second type of concern, which has received less attention, focusses on the value of aiming for longer life. This distinction, which is overlooked in the ethical literature on life extension, is significant because there are features of human psychology (...) and the structure of a life that should give pause when considering how long one should aim to live, but which do not neatly coincide with considerations about how valuable additional life is likely to be. I argue that, while Emanuel’s case for hoping to die at 75 is unconvincing, he nonetheless provides weak pro tanto considerations in favour of taking a moderate life span as a prudential aim around which to base at least some significant life plans. (shrink)

Disability has been traditionally understood as a medical condition. However, people with disabilities have claimed in recent decades for a dephatologized social model of disability—i.e. the functi...

The ever-debated question of triage and allocating the life-saving ventilator during the COVID-19 pandemic has been repeatedly raised and challenged within the ethical community after shortages propelled doctors before life and death decisions. The British Medical Association’s ethical guidance highlighted the possibility of an initial surge of patients that would outstrip the health system’s ability to deliver care “to existing standards,” where utilitarian measures have to be applied, and triage decisions need to maximize “overall benefit” In these emergency circumstances, triage (...) that “grades according to their needs and the probable outcomes of intervention” will prioritize or eliminate patients for treatment, and health professionals may be faced with obligations to withhold or withdraw treatments to some patients in favour of others. This piece is a response and extension to articles published on the manner of involvement for ethics and ethicists in pandemic triage decisions, particularly examining the ability and necessity of establishing triage committees to ameliorate scarce allocation decisions for physicians. (shrink)

This article approaches the ethical dilemma of healthcare allocation and rationing from the perspective of pragmatist ethics, mainly following John Dewey’s ethics. The moral dilemma of healthcare allocation arises whenever we allocate limited resources, and rationing is a necessary option for distributing available resources. In a broader sense, the moral problems of healthcare allocation also encompass the issue of access to primary healthcare, especially for low-income sections of communities. In this sense, allocation always entails rationing – denying service to someone (...) for the benefit of others. Such aspects of allocation and rationing and the relational aspect of disease and health make the problem morally controversial, which makes it difficult to agree on a principle or principles of allocation and rationing applicable across different contexts. Hence, this paper argues that moral challenges of healthcare rationing ought not to be addressed through the appeal to principles, but rather through deliberation that embraces a more pragmatic and democratic approach to negotiating health resource allocation and rationing. However, this does not mean that moral principles and values are insignificant in healthcare allocation. (shrink)

Volume 20, Issue 7, July 2020, Page 174-177.

Background Although it is the moral duty of physicians to protect vulnerable patients, there are no data on how vulnerability is perceived in clinical practice. This study explores how physicians classify someone as “vulnerable”. Method Thirty-three physicians were initially questioned about resource allocation problems in their work. The results of these interviews were examined with qualitative study software to identify characteristics associated with vulnerability in patients. Data were conceptualized, classified and cross-linked to highlight the major determinants of vulnerability. The findings (...) revealed the principal factors that make patients vulnerable in clinical practice, according to our definition of vulnerability: the likelihood of having one’s interests unjustly considered. Results Vulnerability can arise as a result of a mismatch between the characteristics of patients and physicians, the healthcare system, the treatment, or the communication between physicians and patients. Vulnerability appears as a gap between a patient’s needs and the means intended to meet them. Vulnerability can further be the result of doing too little or too much for patients. This result suggests that structures provided by healthcare systems are not as differentiated as they should be to cover all situations. Our initial definition of vulnerability was illustrated and supported by our results, showing that it encompasses all factors involved, not solely personal characteristics, indicating the need for a more pragmatic approach for use in clinical practice. Conclusion Vulnerability is not due to a single factor but appears under certain circumstances when there is a discrepancy between a patient’s interests and the care provided, despite existing compensation systems. (shrink)

BackgroundThe state of the world is one with scarce medical resources where longevity is not equally distributed. Given such facts, setting priorities in health entails making difficult yet unavoidable decisions about which lives to save. The business of saving lives works on the assumption that longevity is valuable and that an early death is worse than a late death. There is a vast literature on health priorities and badness of death, separately. Surprisingly, there has been little cross-fertilisation between the academic (...) fields of priority setting and badness of death. Our aim is to connect philosophical discussions on the badness of death to contemporary debates in health priorities.DiscussionTwo questions regarding death are especially relevant to health priorities. The first question is why death is bad. Death is clearly bad for others, such as family, friends and society. Many philosophers also argue that death can be bad for those who die. This distinction is important for health priorities, because it concerns our fundamental reasons for saving lives. The second question is, ‘When is the worst time to die?’ A premature death is commonly considered worse than a late death. Thus, the number of good life years lost seems to matter to the badness of death. Concerning young individuals, some think the death of infants is worse than the death of adolescents, while others have contrary intuitions. Our claim is that to prioritise between age groups, we must consider the question of when it is worst to die.ConclusionsDeprivationism provides a more plausible approach to health priorities than Epicureanism. If Deprivationism is accepted, we will have a firmer basis for claiming that individuals, in addition to having a health loss caused by morbidity, will have a loss of good life years due to mortality. Additionally, Deprivationism highlights the importance of age and values for health priorities. Regarding age, both variants of Deprivationism imply that stillbirths are included in the Global Burden of Disease. Finally, we suggest that the Time-Relative Interest Account may serve as an alternative to the discounting and age weighting previously applied in the Global Burden of Disease. (shrink)

This article explores the accounts of Canadian-trained health professionals working in humanitarian and development organizations who considered not treating a patient or group of patients because of resource limitations. In the narratives, not treating the patient(s) was sometimes understood as the right thing to do, and sometimes as wrong. In analyzing participants’ narratives we draw attention to how medications and equipment are represented. In one type of narrative, medications and equipment are represented primarily as scarce resources; in another, they are (...) represented as patient care. In the contexts respondents were working, medications and equipment were often both patient care interventions and scarce resources. The analytic point is that health professionals tend to emphasize one conceptualization over the other in coming to assert that not treating is right, or wrong. Rendering tacit ethical frameworks more explicit makes them available for reflection and debate. (shrink)

Researchers have identified the phenomena of moral distress through many studies in Western countries. This research reports the first study of moral distress in Iran. Because of the differences in cultural values and nursing education, nurses working in intensive care units may experience moral distress differently than reported in previous studies. This research used a qualitative method involving semistructured and in-depth interviews of a purposive sample of 31 (28 clinical nurses and 3 nurse educators) individuals to identify the types of (...) moral distress among clinical nurses and nurse educators working in 12 cities in Iran. A content analysis of the data produced four themes to describe the nurses’ moral distress. The four themes were as follows: (a) institutional barriers and constraints; (b) communication problems; (c) futile actions, malpractice, and medical/care errors; (d) inappropriate responsibilities, resources, and competencies. The results demonstrate that moral distress for intensive care unit nurses is different and that the nursing leaders must reduce moral distress among nursing in intensive care. (shrink)

This study aimed to determine if people would use social usefulness as a criterion when allocating a kidney to potential recipients. Participants ranked hypothetical patients in order of priority to receive the kidney, using only information on the patients’ volunteering record, intelligence, emotional intelligence, and attractiveness. The results showed that volunteers were prioritized over nonvolunteers, highly intelligent patients over those with average intelligence, patients with high emotional intelligence over those with average emotional intelligence, and good-looking patients over average-looking patients. There (...) was little evidence of personal favoritism. Implications and limitations are discussed. (shrink)

Volume 20, Issue 2, February 2020, Page 20-22.

The 2009 pandemic of influenza A was relatively mild, but a subsequent outbreak of pandemic influenza could be much worse. According to projections from the Department of Health and Human Services, the potential health consequences of a severe influenza pandemic in the United States could be literally overwhelming: up to 1.9 million deaths; 90 million people sick; 45 million people needing outpatient care; 9.9 million people hospitalized, of whom 1.485 million would need treatment in an intensive care unit ; and (...) 742,500 patients needing mechanical ventilators. Even a less cataclysmic, moderate pandemic would result in 209,000 deaths; 90 million people sick; 45 million people needing outpatient care; 865,000 people hospitalized, of whom 128,750 would need treatment in an ICU; and 64,875 patients needing mechanical ventilators. (shrink)

The 2009 pandemic of influenza A (H1N1) was relatively mild, but a subsequent outbreak of pandemic influenza could be much worse. According to projections from the Department of Health and Human Services, the potential health consequences of a severe (1918-like) influenza pandemic in the United States could be literally overwhelming: up to 1.9 million deaths; 90 million people sick; 45 million people needing outpatient care; 9.9 million people hospitalized, of whom 1.485 million would need treatment in an intensive care unit (...) (ICU); and 742,500 patients needing mechanical ventilators. Even a less cataclysmic, moderate pandemic (like 1958 or 1968) would result in 209,000 deaths; 90 million people sick; 45 million people needing outpatient care; 865,000 people hospitalized, of whom 128,750 would need treatment in an ICU; and 64,875 patients needing mechanical ventilators. (shrink)

Volume 20, Issue 2, February 2020, Page 35-38.

This comment on the case presented in ‘Cholera and Nothing More’ argues that the physicians at this public-health centre did not have an ordinary clinician's obligations to promote the health of the people who came to them for care, as they were instead set up to serve a laudable and urgent public-health goal, namely, controlling a cholera outbreak. It argues that, nonetheless, these physicians did have some limited moral duties to care for other diseases they encountered—some ancillary-care duties—arising from their (...) voluntarily entering into a kind of intimate relationship with the patients they took in, one in which those patients effectively waive certain rights to bodily and medical privacy. (shrink)

Some argue that the concept of medical need is inadequate to inform the design of a universal health care system—particularly an institutional rather than a residual system. They argue that the concept contradicts the idea of comprehensiveness; leads to unsustainable expenditures; is too indeterminate for policy; and supports only a prioritarian distribution. I argue that ‘comprehensive’ understood as ‘including the full continuum of care’ and ‘medically necessary’ understood as ‘prioritized by medical criteria’ are not contradictory, and that UHC is a (...) solution to the problem of sustainability, not its cause. Those who criticize ‘medical need’ for indeterminacy are not transparent about the source of their commitment to their standards of determinacy: they promote standards that are higher than is necessary for legitimate policy, ignoring opportunity costs. Furthermore, the indeterminacy of concepts affects all risk-sharing systems and all systems that rely on medical standard of care. I then argue that the concept of need in itself does not imply a minimal sufficientist standard or a prioritarian distribution; neither does the idea of legitimate public policy dictate that public services be minimalist. The policy choice for a system of health care that is comprehensive and offers as good care as can be achieved when delivered on equal terms and conditions for all is a coherent option. (shrink)

Medical resource allocation is a controversial topic, because in the end it prioritises some peoples’ medical problems over those of others. This is less controversial when there is a clear clinical reason for such a prioritisation, but when such a reason is not available people might perceive it as deeming certain individuals more important than others. This article looks at the role of social utility in medical resource allocation, in a situation where the clinical outcome would be identical if either (...) person received the treatment. This situation is explored with a focus on the United Kingdom, but its conclusions have wider applications to any system where healthcare is tax-payer funded. The article proposes an experience adjusted life years system, and discusses its strengths and weaknesses. (shrink)

The main aim of this paper is to investigate the views of healthcare professionals in Portugal about healthcare rationing, and compare them with the views of college students. A self-administered questionnaire was used to collect data from a sample of 60 healthcare professionals and 180 college students. Respondents faced a hypothetical rationing dilemma where they had to order four patients and justify their choices. Multinomial logistic regressions were used to test for differences in orderings, and content analysis to categorize the (...) written justifications. The findings suggest that both groups appeared to support three main rationing principles: health maximization, priority to the severely ill and priority to the young. However, professionals seemed to give less weight to the latter principle. In conclusion, professionals have similar views to students about healthcare rationing, though may be slightly less inclined to give priority to the young. (shrink)

In “Conceptions of Care,” Tove Pettersen discusses and articulates select ways in which care can be comprehended. Several difficulties related to an altruistic understanding of care are examined before the author presents the case for a more favorable concept: mature care. Mature care is intended to take into account the interests of both parties to the caring relationship. This understanding of care facilitates the expression of the relational and reciprocal aspects of caring while emphasizing the equal worth of all involved. (...) Also attended to is the embeddedness of care in wider cultural and political contexts. (shrink)

In this short response to Kerstein and Bognar, we clarify three aspects of the complete lives system, which we propose as a system of allocating scarce medical interventions. We argue that the complete lives system provides meaningful guidance even though it does not provide an algorithm. We also defend the investment modification to the complete lives system, which prioritizes adolescents and older children over younger children; argue that sickest-first allocation remains flawed when scarcity is absolute and ongoing; and argue that (...) Kerstein and Bognar are mistaken to base their allocation principles on differences in personhood. (shrink)

In this Commentary, I propose an ethical framework for ethical discussions around the allocation of scarce resources in COVID-19 response. The framework incorporates four principles: beneficence (benefiting people by saving lives or years of life), equality, remedying disadvantage, and recognizing past conduct. I then discuss how the framework interacts with ethical constraints against using people as a mere means and against causing death. The commentary closes by criticizing the equation of deontological ethics with random or first-come, first-served allocation and of (...) allocation that aims to save more lives or years of life with utilitarianism.. (shrink)

In a severe influenza pandemic, hospitals will likely experience serious and widespread shortages of patient pulmonary ventilators and of staff qualified to operate them. Deciding who will receive access to mechanical ventilation will often determine who lives and who dies. This prospect raises an important question whether pandemic preparedness plans should include some process by which individuals affected by ventilator rationing would have the opportunity to appeal adverse decisions. However, the issue of appeals processes to ventilator rationing decisions has been (...) largely neglected in state pandemic planning efforts. If we are to devise just and effective plans for coping with a severe influenza pandemic, more attention to the issue of appeals processes for pandemic ventilator rationing decisions is needed. Arguments for and against appeals processes are considered, and some suggestions are offered to help efforts at devising more rational pandemic preparedness plans. (shrink)

If the resources used to wage wars could be spent elsewhere and save more lives, does this mean that wars are unjustified? This article considers this question, which has been largely overlooked by Just War Theorists and pacifists. It focuses on whether the opportunity costs of war lead to a form of pacifism, which it calls ‘Opportunity Costs Pacifism’. The article argues that Opportunity Costs Pacifism is, at the more ideal level, compelling. It suggests that the only plausible response to (...) Opportunity Costs Pacifism applies in highly nonideal circumstances. This has major implications for Just War Theory and pacifism since it is only at the highly nonideal level that war can be justified. (shrink)

Improving public understanding and acceptance are critical for promoting coronavirus vaccination. However, how to promote COVID-19 vaccine programs remains controversial due to various ethical issues. This study, thus, aimed to survey the acceptance of COVID-19 vaccines among Japanese citizens and discuss relevant ethical issues. A cross-sectional survey was conducted via an online platform. An anonymous, quantitative, self-administered online questionnaire was sent to 6965 registered Japanese residents, which included questions regarding the respondent’s general knowledge, experience, and opinions of vaccines, vaccine development, (...) COVID-19, and COVID-19 vaccines. Of the 1569 respondents, 730 and 839 were categorized into the younger and older groups, respectively. Most of the respondents possessed general knowledge of COVID-19 vaccines and their features. Of the respondents, 57.8% definitely agreed or somewhat agreed to receive COVID-19 vaccines. The older group showed significantly greater willingness to receive vaccines and higher literacy regarding vaccines in general. Possible reasons for the older group’s greater willingness to receive COVID-19 vaccines are a high risk of severe COVID-19 infection and their past accumulated experience of receiving various vaccinations. Although active public intervention could increase vaccination rates, most of the respondents did not agree with mandatory vaccination. Furthermore, a gap between the participants in the COVID-19 vaccine trials and the prioritized population in real-world vaccination should be adjusted in future vaccine development. (shrink)

Volume 20, Issue 3, March 2020, Page 63-65.

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness (...) and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

Zusammenfassung Compassionate Use beschreibt die Anwendung zulassungsüberschreitender Arzneimittel für Patient*innengruppen, die an einer lebensbedrohlichen oder zu einer schweren Behinderung führenden Erkrankung leiden, ohne dass eine alternative Therapieoption besteht. An Ärzt*innen vorbei werden solche Programme ausschließlich von Pharmaunternehmen initiiert, was viele ethische Konflikte mit sich bringt. Eine neue Dimension erreichte das 2020 gestartete Programm für _Onasemnogenum abeparvovecum_ zur Therapie von Spinaler Muskelatrophie bei Kindern, welches die Krankheit nach nur einmaliger Gabe stoppen sollte. Die globale Allokation von nur 100 zur Verfügung gestellten (...) Dosierungen per Losverfahren stellte ein Novum bei der Allokation in Compassionate Use-Programmen dar und wurde vielfach kritisiert. Diese Arbeit untersucht mögliche alternative Allokationsprinzipien auf das Beispiel von _Onasemnogenum abeparvovecum_. Für jedes in Frage kommende Prinzip der Allokation medizinischer Güter bestehen Aspekte, die im Hinblick auf die drängende Zeit und die globale Verteilung bedacht werden müssen. Dies lässt einige Prinzipien wie First-Come-First-Served vernachlässigbar erscheinen. Verbliebene Prinzipien werden hierarchisch geordnet, um einen Algorithmus abzuleiten, der eine Alternative zum Losverfahren darstellen kann. Eine Kombination von Teilnahmebereitschaft bei Forschung, Dringlichkeit und Erfolgsaussicht (bezogen auf die Existenz supportiver Therapieoptionen) kann in ähnlichen Fällen bei zukünftigen globalen Compassionate Use-Programmen bei Kindern erwogen werden. Da universelle Algorithmen nur schwer definierbar sind, sollten Allokationskriterien in jedem Fall durch ein unabhängiges Expert*innengremium diskutiert werden. Sowohl die Konstitution eines solchen Gremiums sowie deren verpflichtende Konsultierung sind gefordert, um für Entlastung aller Beteiligten zu sorgen und Willkür vorzubeugen. (shrink)

Definition of the problem Compassionate use is the use of unapproved drugs in groups of patients suffering from a disease that, in the absence of an alternative treatment option, is life-threatening or leads to severe disability. Physicians are not in charge because access to the drug is only granted by pharmaceutical companies, which comes along with many ethical issues. Launched in 2020, the program of Onasemnogenum abeparvovecum against spinal muscular atrophy in children reached a new dimension. The intent of this (...) drug is to stop the progression of the disease with just a single dose, but the company limited the doses in the program to only 100. The global allocation was by lottery, which was considered a novelty in compassionate use history and therefore widely criticized. This paper investigates alternative allocation principles. Arguments Each possible principle is accompanied by many aspects that need to be considered with regard to urgency and global distribution. This makes some principles like first-come-first-served seem negligible. Remaining principles are ordered hierarchically to derive an algorithm that can represent an alternative to a lottery. A combination of willingness to participate in research, urgency, and likelihood of success (relative to the availability of supportive treatment options) may be considered in similar cases in future global compassionate use programs with children. Conclusion Since universal algorithms are difficult to define, allocation criteria should always be discussed by an independent panel of experts. Both the constitution of such a panel and its mandatory consultation are necessary in order to decrease the burden for all those involved and to prevent arbitrariness. (shrink)

ZusammenfassungEin niedriger sozialer Status ist oft mit erhöhter Morbidität und Mortalität verbunden. In dem Beitrag wird versucht, diese „gesundheitliche Ungleichheit“ aus sozial-epidemiologischer Sicht zu bewerten. Im Mittelpunkt steht dabei die Frage nach der Verantwortung für die erhöhte gesundheitliche Gefährdung der unteren Statusgruppen. Nur ein kleiner Teil der gesundheitlichen Ungleichheit kann durch das Gesundheitsverhalten erklärt werden. Umso wichtiger sind andere Ursachen. Dazu gehören die sozialen Unterschiede bei den Belastungen in der Wohnumgebung, bei den Arbeitsbedingungen und auch beim Zugang zur gesundheitlichen Versorgung. (...) Diese sozial-epidemiologischen Ergebnisse lassen sich gut in die gesundheitsethische Diskussion integrieren. Die Frage, wer für welchen Teil der gesundheitlichen Ungleichheit verantwortlich ist, löst oft heftige Kontroversen aus. Sie sind nur dann zu lösen, wenn die sozial-epidemiologische und die gesundheitsethische Diskussion besser miteinander vernetzt werden. (shrink)

The COVID-19 pandemic has been overwhelming public health-care systems around the world. With demand exceeding the availability of medical resources in several regions, hospitals have been forced to invoke triage. To ensure that this difficult task proceeds in a fair and organised manner, governments scrambled experts to draft triage guidelines under enormous time pressure. Although there are similarities between the documents, they vary considerably in how much weight their respective authors place on the different criteria that they propose. Since most (...) of the recommendations do not come with ethical justifications, analysing them requires that one traces back these criteria to their underlying theories of distributive justice. In the literature, COVID-19 triage has been portrayed as a value conflict solely between utilitarian and egalitarian elements. While these two accounts are indeed the main antipodes, I shall show that in fact all four classic theories of distributive justice are involved: utilitarianism, egalitarianism, libertarianism, and communitarianism. Detecting these in the documents and classifying the suggested criteria accordingly enables one to understand the balancing between the different approaches to distributive justice—which is crucial for both managing the current pandemic and in preparation for the next global health crisis. (shrink)