BackgroundResuscitation and treatment of critically ill newborn infants is associated with relatively high mortality, morbidity and cost. Guidelines relating to resuscitation have traditionally focused on the best interests of infants. There are, however, limited resources available in the neonatal intensive care unit, meaning that difficult decisions sometimes need to be made. This study explores the intuitions of lay people regarding resource allocation decisions in the NICU.MethodsThe study design was a cross-sectional quantitative survey, consisting of 20 hypothetical rationing scenarios. There were (...) 119 respondents who entered the questionnaire, and 109 who completed it. The respondents were adult US and Indian participants of the online crowdsourcing platform Mechanical Turk. Respondents were asked to decide which of two infants to treat in a situation of scarce resources. Demographic characteristics, personality traits and political views were recorded. Respondents were also asked to respond to a widely cited thought experiment involving rationing.ResultsThe majority of respondents, in all except one scenario, chose the utilitarian option of directing treatment to the infant with the higher chance of survival, higher life expectancy, less severe disability, and less expensive treatment. As discrepancy between outcomes decreased, however, there was a statistically significant increase in egalitarian responses and decrease in utilitarian responses in scenarios involving chance of survival, life expectancy, and cost of treatment. In the classic ‘lifeboat’ scenario, all but two respondents were utilitarian.ConclusionsThis survey suggests that in situations of scarcity and equal clinical need, non-health professionals support rationing of life-saving treatment based on probability of survival, duration of survival, cost of treatment or quality of life. However, where the difference in prognosis or cost is very small, non-health professionals preferred to give infants an equal chance of receiving treatment. (shrink)

The puzzle of resultant moral luck arises when we are disposed to think that an agent who caused a harm deserves to be blamed more than an otherwise identical agent who did not. One popular perspective on resultant moral luck explains our dispositions to produce different judgments with regard to the agents who feature in these cases as a product not of what they genuinely deserve but of our epistemic situation. On this account, there is no genuine resultant moral luck; (...) there is only luck in what evidence becomes available to observers. In this paper, I develop an evolutionary account of our inclination to take the results of actions as evidence for the mental states of agents, thereby explaining why the resulting intuitions are recalcitrant to correction. The account explains why the puzzle of resultant moral luck arises: because our disposition to take the harms agents cause as evidence of their mental states can produce intuitions which conflict with those that arise when we examine agents’ mental states without reference to the results of their actions. The account also helps to solve the puzzle of resultant moral luck, by providing a strong reason to ignore the intuitions caused by our disposition to regard actual harms as evidence of mental states. Since these intuitions arise using an unreliable proxy for agents’ mental states, they ought to be trumped by more reliable evidence. (shrink)

Lifestyle diseases constitute an increasing proportion of health problems and this trend is likely to continue. A better understanding of the responsibility argument is important for the assessment of policies aimed at meeting this challenge. Holding individuals accountable for their choices in the context of health care is, however, controversial. There are powerful arguments both for and against such policies. In this article the main arguments for and the traditional arguments against the use of individual responsibility as a criterion for (...) the distribution of scarce health resources will be briefly outlined. It is argued that one of the most prominent contemporary normative traditions, liberal egalitarianism, presents a way of holding individuals accountable for their choices that avoids most of the problems pointed out by the critics. The aim of the article is to propose a plausible interpretation of liberal egalitarianism with respect to responsibility and health care and assess it against reasonable counter-arguments. (shrink)

In the United Kingdom, a number of National Health Service Clinical Commissioning Groups have proposed controversial measures to restrict elective surgery for patients who either smoke or are obese. Whilst the nature of these measures varies between NHS authorities, typically, patients above a certain Body Mass Index and smokers are required to lose weight and quit smoking prior to being considered eligible for elective surgery. Patients will be supported and monitored throughout this mandatory period to ensure their clinical needs are (...) appropriately met. Controversy regarding such measures has primarily centred on the perceived unfairness of targeting certain health states and lifestyle choices to save public money. Concerns have also been raised in response to rhetoric from certain NHS authorities, which may be taken to imply that such measures punitively hold people responsible for behaviours affecting their health states, or simply for being in a particular health state. In this paper, we examine the various elective surgery rationing measures presented by NHS authorities. We argue that, where obesity and smoking have significant implications for elective surgical outcomes, bearing on effectiveness, the rationing of this surgery can be justified on prognostic grounds. It is permissible to aim to maximise the benefit provided by limited resources, especially for interventions that are not urgently required. However, we identify gaps in the empirical evidence needed to conclusively demonstrate these prognostic grounds, particularly for obese patients. Furthermore, we argue that appeals to personal responsibility, both in the prospective and retrospective sense, are insufficient in justifying this particular policy. Given the strength of an alternative justification grounded in clinical effectiveness, rhetoric from NHS authorities should avoid explicit statements, which suggest that personal responsibility is the key justificatory basis of proposed rationing measures. (shrink)

This paper critically examines the extent to which health promoting wearable technologies can provide people with greater autonomy over their health. These devices are frequently presented as a means of expanding the possibilities people have for making healthier decisions and living healthier lives. We accept that by collecting, monitoring, analysing and displaying biomedical data, and by helping to underpin motivation, wearable technologies can support autonomy over health. However, we argue that their contribution in this regard is limited and that—even with (...) respect to their ‘autonomy enhancing’ potential—these devices may deliver costs as well as benefits. We proceed by rehearsing the distinction that can be drawn between procedural autonomy and substantive-relational autonomy. While the information provided by wearable technologies may support deliberation and decision-making, in isolation these technologies do little to provide substantive opportunities to act and achieve better health. As a consequence, wearable technologies risk generating burdens of anxiety and stigma for their users and reproducing existing health inequalities. We then reexamine the extent to which wearable technologies actually support autonomous deliberation. We argue that wearable technologies that subject their users to biomedical and consumerist epistemologies, norms and values also risk undermining processes of genuinely autonomous deliberation. (shrink)

The increasing awareness of personal health responsibility had led to the claim that patients with ‘self-inflicted’ conditions have less of a right to treatment at the public's expense than patients whose conditions arose from ‘uncontrollable’ causes. This paper suggests that regardless of any social decision as to the limits and scope of individual responsibility for health, the moral framework for discussing this issue is equality. In order to reach a consensus, discourse should be according to the common basis of all (...) theories of justice, Aristotle's formal principle of justice: ‘equals must be treated equally and unequals must be treated unequally, in proportion to the relevant inequality’. This paper deals with the question of whether and under what circumstances risk-taking behaviour could be regarded as a ‘relevant inequality’ with respect to the right to health care. Following a discussion of the relevant inequalities in health care, the conclusion is reached that the fact that the condition was avoidably caused by the patient and is therefore his or her fault can not be regarded necessarily as a relevant inequality. Therefore, the issue is one of societal support for health care; after defining relevant inequalities in this respect, the paper attempts to apply them to self-inflicted conditions. This analysis reveals that, in theory, it may be just to restrict societal support in such cases. However, the application of this conclusion requires proof of many factual claims—for which there is often very limited evidence. (shrink)

The distribution of scarce healthcare resources is an increasingly important issue due to factors such as expensive ‘high tech’ medicine, longer life expectancies and the rising prevalence of chronic illness. Furthermore, in the current healthcare context lifestyle-related factors such as high blood pressure, tobacco use and obesity are believed to contribute significantly to the global burden of disease. As such, this paper focuses on an ongoing debate in the academic literature regarding the role of responsibility for illness in healthcare resource (...) allocation: should patients with self-caused illness receive lower priority in access to healthcare resources? This paper critically describes the lower priority debate's 12 key arguments and maps out their relationships. This analysis reveals that most arguments have been refuted and that the debate has stalled and remains unresolved. In conclusion, we suggest progression could be achieved by inviting multidisciplinary input from a range of stakeholders for the development of evidence-based critical evaluations of existing arguments and the development of novel arguments, including the outstanding rebuttals. (shrink)

In her excellent and comprehensive article, Friesen argues that utilising personal responsibility in healthcare is problematic in several ways: it is difficult to ascribe responsibility to behaviour; there is a risk of prejudice and bias in deciding which behaviours a person should be held responsible for; it may be ineffective at reducing health costs. In this short commentary, I will elaborate the critique of personal responsibility in health but suggest one way in which it could be used ethically. In doing (...) so, I will introduce the concepts of reasonable risk and golden opportunity. I previously argued that it is both difficult to disentangle responsibility and that we risk prejudice and bias in singling out behaviours that are socially disapproved of.1 So I am sympathetic to Friesen’s concerns. I also discussed another way in which ascribing personal responsibility for health is problematic which Friesen does not discuss and which, in my view, is the most concerning and further supports her arguments. It represents a back door assault on liberalism and neutrality towards concepts of the good life. Even if one were to accurately and in an unbiased way divine the personal contribution to disease, the greatest problem would remain: those who voluntarily take on risk would be penalised. That is, such a system would be risk-averse. Those lives which avoided risk would be prioritised, while those who chose to take on risky activities in their conception of the good life would be penalised. Yet risk is necessary, both for the good life, and social progress. Columbus, Edmund Hilary, Florence Nightingale, Ernest Hemingway and countless monumental figures in human history took risks in order to achieve something great. Should we aim for a society of trembling, teetotalling health nuts? Surely that prospect is horrific. It is horrific because it elevates health …. (shrink)

Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...) sensors Population biobanks, cohort studies, and genome databases Clinical and public health data Direct-to-consumer genetic testing Social media Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such data. (shrink)

Unhealthy lifestyle contributes significantly to the burden of disease. Scarce medical resources that could alternatively be spent on interventions to prevent or cure sufferings for which no one is to blame, are spent on prevention or treatment of disease that could be avoided through individual lifestyle changes. This may encourage policy makers and health care professionals to opt for a criterion of individual responsibility for medical suffering when setting priorities. The following article asks whether responsibility-based reasoning should be accepted as (...) relevant for fair and legitimate healthcare rationing. The luck-egalitarian argument that inequalities in health expectancies that derive from unchosen features of people’s circumstances are unjust and should be compensated, while inequalities that reflect personal choices of lifestyle may not, is discussed. It seems that while a backward-looking interpretation of individual responsibility cannot be relevant as a criterion of priority setting, a forward-looking conception of responsibility may be approved.Within all modern societies healthcare authorities are facing difficult priority setting problems. Various criteria for rationing medical intervention have been proposed due to scarcity of resources. Until now, individual responsibility for medical suffering has been given little attention in the public or in academic debate. This is about to change. As Alexander Cappelen and Ole Norheim have pointed out in a recent article in this journal, unhealthy lifestyle contributes increasingly to the burden of disease. A better understanding of the responsibility argument is important for the assessment of policies aimed at meeting this challenge.1 In this article the following question is addressed: should responsibility-based arguments be accepted as relevant to meeting healthcare rationing fairly and legitimately? I will argue that while a backward-looking conception of individual responsibility should not be endorsed, a forward-looking notion of responsibility may be approved. (shrink)

ABSTRACT A number of philosophers have argued that alcoholics should receive lower priority for liver transplantations because they are morally responsible for their medical conditions. In this paper, I argue that this conclusion is false. Moral responsibility should not be used as a criterion for the allocation of medical resources. The reason I advance goes further than the technical problem of assessing moral responsibility. The deeper problem is that using moral responsibility as an allocation criterion undermines the functioning of medicine.

The allocation of any scarce health care resource, especially a lifesaving resource, can create profound ethical and legal challenges. Liver transplant allocation currently is based upon urgency, a sickest-first approach, and does not utilize capacity to benefit. While urgency can be described reasonably well with the MELD system, benefit encompasses multiple dimensions of patients’ well-being. Currently, the balance between both principles is ill-defined. This survey with 502 participants examines how urgency and benefit are weighted by different stakeholders. Liver transplant patients (...) favored the sickest-first allocation, although all other groups tended to favor benefit. Criteria of a successful transplantation were a minimum survival of at least 1 year and recovery of functional status to being ambulatory and capable of all self-care. An individual delisting decision was accepted when the 1-year survival probability would fall below 50%. Benefit was found to be a critical variable that may also trigger the willingness to donate organs. The strong interest of stakeholder for successful liver transplants is inadequately translated into current allocation rules. (shrink)

Background The allocation of any scarce health care resource, especially a lifesaving resource, can create profound ethical and legal challenges. Liver transplant allocation currently is based upon urgency, a sickest-first approach, and does not utilize capacity to benefit. While urgency can be described reasonably well with the MELD system, benefit encompasses multiple dimensions of patients’ well-being. Currently, the balance between both principles is ill-defined. Methods This survey with 502 participants examines how urgency and benefit are weighted by different stakeholders. Results (...) Liver transplant patients favored the sickest-first allocation, although all other groups tended to favor benefit. Criteria of a successful transplantation were a minimum survival of at least 1 year and recovery of functional status to being ambulatory and capable of all self-care. An individual delisting decision was accepted when the 1-year survival probability would fall below 50%. Benefit was found to be a critical variable that may also trigger the willingness to donate organs. Conclusions The strong interest of stakeholder for successful liver transplants is inadequately translated into current allocation rules. (shrink)

The debate on responsibility for health takes place within political philosophy and in policy setting. It is increasingly relevant in the context of rationing scarce resources as a substantial, and growing, proportion of diseases in high-income countries is attributable to lifestyle. Until now, empirical studies of medical professionals' attitudes towards personal responsibility for health as a component of prioritisation have been lacking. This paper explores to what extent Norwegian physicians find personal responsibility for health relevant in prioritisation and what type (...) of risk behaviour they consider relevant in such decisions. The proportion who agree that it should count varies from 17.1% to 26.9%. Higher age and being male is positively correlated with acceptance. The doctors are more willing to consider substance use in priority setting decisions than choices on food and exercise. The findings reveal that a sizeable proportion have beliefs that conflict with the norms stated in the Norwegian Patient Act. It may be possible that the implementation of legal regulations can be hindered by the opposing attitudes among doctors. A further debate on the role personal responsibility should play in priority setting seems warranted. However, given the deep controversies about the concept of health responsibility and its application, it would be wise to proceed with caution.Design Nationally representative cross-sectional study. Setting Panel-data. Participants 1072 respondents, response rate 65%. (shrink)