A necessary book for healthcare professionals and theologians struggling with moral questions about rationing in healthcare. This book outlines a Christian ethical basis for how decisions about health care funding and priority-setting ought to be made.

Christine Clavien and Samia Hurst (henceforth C-H) make at least three valuable contributions to the literature on responsibility and healthcare. They offer an admirably clear and workable set of criteria for determining a patient's degree of responsibility for her health condition; they deploy those criteria to cast doubt on the view that patients with lifestyle-related conditions are typically significantly responsible for their conditions; and they outline several practical difficulties that would be raised by any attempt to introduce responsibility-sensitive (...) class='Hi'>healthcare funding. I am sympathetic to the general thrust of their argument, share—at least tentatively—their policy conclusions, and was persuaded by much of the detail of their argument. However, I do have three critical comments. (shrink)

Christine Clavien and Samia Hurst1 (henceforth C-H) make at least three valuable contributions to the literature on responsibility and healthcare. They offer an admirably clear and workable set of criteria for determining a patient's degree of responsibility for her health condition; they deploy those criteria to cast doubt on the view that patients with lifestyle-related conditions are typically significantly responsible for their conditions; and they outline several practical difficulties that would be raised by any attempt to introduce responsibility-sensitive (...) class='Hi'>healthcare funding. I am sympathetic to the general thrust of their argument, share—at least tentatively—their policy conclusions, and was persuaded by much of the detail of their argument. However, I do have three critical comments. (shrink)

The burdens of resource constraints in publicly funded healthcare systems urge decision makers in countries like Sweden, Norway and the UK to find new financial solutions. One proposal that has been put forward is co-payment—a financial model where some treatment or care is made available to patients who are willing and able to pay the costs that exceed the available alternatives fully covered by public means. Co-payment of this sort has been associated with various ethical concerns. These range from (...) worries that it has a negative impact on patients' wellbeing and on health care institutions, to fears that co-payment is in conflict with core values of publicly funded health care systems. This article provides an overview of the main ethical issues associated with co-payment, and ethical arguments both in support of and against it will be presented and analyzed. (shrink)

What proportion of available healthcare funds should be allocated to hip replacement operations and what proportion to psychiatric care? What proportion should go to cardiac patients and what to newborns in intensive care? What proportion should go to preventative medicine and what to treating existing conditions? In general, how should limited healthcare resources be distributed If not all demands can be met?

Post-9/11, concern about bioterrorism has transformed public health from unappreciated to a central component of national security. Within the War on Terror, bioterrorism preparedness has taken a back seat only to direct military action in terms of funding. Domestically, homelessness, joblessness, crime, education, and race relations are just a few of a litany of pressing issues requiring government attention. Even within the biomedical sciences and healthcare, issues surrounding the fact that more than 40 million Americans lack health insurance, (...) the rising cost of prescription medications, and the use of government funds for research using embryonic stem cells remain unresolved. Should we prioritize a hypothetical threat (bioterrorism), or existing conditions that have implications for identifiable individuals? Even more fundamentally, should we prioritize research aimed at defense from bioterrorism (or even terrorism in general) when there are so many pressing social problems that affect the U.S. population? (shrink)

In healthcare, a tension sometimes arises between the injunction to do as much good as possible with scarce resources and the injunction to rescue identifiable individuals in immediate peril, regardless of cost (the “Rule of Rescue”). This tension can generate serious ethical and political difficulties for public policy makers faced with making explicit decisions about the public funding of controversial health technologies, such as costly new cancer drugs. In this paper we explore the appropriate role of the Rule (...) of Rescue in public resource allocation decisions by health technology funding advisory bodies such as the National Institute for Health and Clinical Excellence. We consider practical approaches to operationalising the Rule of Rescue from Australia and the UK before examining the relevance of individual moral imperatives to public policy making. We conclude that that whilst public policy makers in a humane society should facilitate exceptional departures from a cost effectiveness norm in clinical decisions about identified individuals, it is not so obvious that they should, as a matter of national public policy, exempt any one group of unidentified individuals within society from the rules of opportunity cost at the expense of all others. (shrink)

Concern about the rapid ageing of all societies reaches alarming proportions as healthcare inequities are steeply rising, prompting the elderly to live longer but subject to insufficient social protection and healthcare in the wake of dwindling public resources. The aged population of developing nations are facing additional hardships due to the growing gap between needs and the financial reductions of public institutions, retirement funds, and the trend towards privatization of essential services turned into commodities. Current approaches to allocation (...) of insufficient resources without ageist discrimination are briefly discussed: individual self‐care aimed at successful, active and healthy ageing based on resourcefulness of the privileged elderly; utilitarian approaches founded on QALY and fair innings, and human rights focused on the plights of the elderly. These approaches cannot apply to resources poor nations, who need to engage in context‐bound bioethics dealing with the realities of their exposed ageing population. A developing world bioethics is needed to face the plights of the elderly in countries with low and middle‐income and insufficient social capital. Suggested are: 1) a phenomenological approach based on the interaction of bioethics and ethnology, furthering grass‐roots input from the elderly; 2) Create small communities –campus‐like boroughs– to simplify accessibility to social services and healthcare facilities, as an alternative to the high‐cost WHO proposal of age‐friendly large cities. (shrink)

Finland is a country in Northern Europe with a population of approximately 5.1 million people. It lies between Sweden and Russia and has a border with Norway too. It is part of the European Union and also belongs to the European Monetary Union. It is a welfare state in the sense that healthcare services, schools, universities, and social services are for the most part paid for by tax-based funding. In terms of basic healthcare, the state, through local (...) municipalities, provides comprehensive coverage to all residents, and this is utilized by both the wealthy and the poor. (shrink)

Both healthcare professionals and the healthcare system must defend each patient's health individually while simultaneously seeking to protect the population's health in general. Nowadays, there is an important increase in the cost of healthcare supply, mainly due to the developments of medical science, the public's expectations and the demographic ageing. Since healthcare resources are not unlimited, it is obvious that immoderate consumption of them by certain patients limits the use of the same funds by others. Therefore, (...) we have to seek an optimal distribution of the existing resources in order to manage a constriction of expenses, especially under the circumstances of the modern economic crisis. The criteria of effectiveness and efficiency should be used. Health policies focus on both the public's behaviour and the rules of medical practice. Under the modern challenges the physician's role is particularly important for the protection of the patient's health and the promotion of public health. (shrink)

Machine‐learning algorithms have the potential to revolutionise diagnostic and prognostic tasks in health care, yet algorithmic performance levels can be materially worse for subgroups that have been underrepresented in algorithmic training data. Given this epistemic deficit, the inclusion of underrepresented groups in algorithmic processes can result in harm. Yet delaying the deployment of algorithmic systems until more equitable results can be achieved would avoidably and foreseeably lead to a significant number of unnecessary deaths in well‐represented populations. Faced with this dilemma (...) between equity and utility, we draw on two case studies involving breast cancer and melanoma to argue for the selective deployment of diagnostic and prognostic tools for some well‐represented groups, even if this results in the temporary exclusion of underrepresented patients from algorithmic approaches. We argue that this approach is justifiable when the inclusion of underrepresented patients would cause them to be harmed. While the context of historic injustice poses a considerable challenge for the ethical acceptability of selective algorithmic deployment strategies, we argue that, at least for the case studies addressed in this article, the issue of historic injustice is better addressed through nonalgorithmic measures, including being transparent with patients about the nature of the current epistemic deficits, providing additional services to algorithmically excluded populations, and through urgent commitments to gather additional algorithmic training data from excluded populations, paving the way for universal algorithmic deployment that is accurate for all patient groups. These commitments should be supported by regulation and, where necessary, government funding to ensure that any delays for excluded groups are kept to the minimum. We offer an ethical algorithm for algorithms—showing when to ethically delay, expedite, or selectively deploy algorithmic systems in healthcare settings. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public (...) values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

Both developing and developed countries face an increasing mismatch between what patients expect to receive from healthcare and what the public healthcare systems can afford to provide. Where there has been a growing recognition of the entitlement to receive healthcare, the frustrated expectations with regards to the level of provision has led to lawsuits challenging the denial of funding for health treatments by public health systems. This book analyses the impact of courts and litigation on the (...) way health systems set priorities and make rationing decisions. In particular, it focuses on how the judicial protection of the right to healthcare can impact the institutionalization, functioning and centrality of Health Technology Assessment (HTA) for decisions about the funding of treatment. Based on the case study of three jurisdictions - Brazil, Colombia, and England - it shows that courts can be a key driver for the institutionalization of HTA. These case studies show the paradoxes of judicial control, which can promote accountability and impair it, demand administrative competence and undermine bureaucratic capacities. The case studies offer a nuanced and evidence-informed understanding of these paradoxes in the context of health care by showing how the judicial control of priority-setting decisions in health care can be used to require and control an explicit scheme for health technology assessment, but can also limit and circumvent it. (shrink)

When advocates of insurance‐privatization consider whether private insurance‐dominated systems achieve justice at all, they tend to rely on an incomplete set of criteria for a just healthcare system. They also mistakenly assume that it is enough to show that justice is in principle achievable within a private insurance‐dominated system. This essay offers a more complete set of criteria for a just healthcare system. It then argues that the motivational assumptions needed to make insurance‐privatization at all plausible are inconsistent (...) with the motivational assumptions needed to show that in practice a private insurance‐dominated system will achieve justice. A private insurance‐dominated system can be expected to satisfy the criteria for just healthcare only if there is extensive and effective regulation to constrain the normal competitive behavior of private insurers or if generous public funds are provided to fill the gaps in access left by the private insurance market. Yet the assumptions about the motivations and abilities of the public, regulators, and public officials needed to satisfy conditions or contradict the privatization advocate's explanations of how privatization will maximize efficiency, choice, and quality of care. (shrink)

In Rogers, the Court of Appeal held that the decision of Swindon N.H.S. Primary Care Trust to refuse to fund Herceptin for the treatment of Ann Rogers against breast cancer was irrational. The P.C.T. maintained that their decision was not resource driven but based on the fact that Herceptin was, at that time, not licensed by the European Medicines Agency (E.M.E.A.) for use in early stage breast cancer. Yet it was prepared to fund its use in ‹exceptional circumstances’ which could (...) only be based upon the personal situation of the patient. In this note, I focus upon the ‹exceptionality’ argument in the context of the patient as consumer of healthcare and women as carers. I argue for a focus upon caring rather than consumerism in healthcare. (shrink)

Efficiency is an important value for all publicly funded healthcare systems. Limited resources need to be used prudently and wisely in order to ensure best possible outcomes and waste avoidance. Since 2010, the drive for efficiency, in the UK, has acquired a new impetus, as the country embarked on an ‘age of austerity’ purportedly to balance its books and reduce national deficit. Although the NHS did not suffer any direct budget cuts, the austerity policies imposed on the welfare system, (...) including social and mental healthcare, have had a direct and detrimental impact on the healthcare service. This paper draws from a qualitative study conducted in three A&E Departments in England to explore the effects of austerity policies on the everyday experiences of doctors and nurses working in Emergency Departments. It discusses the operationalisation of efficiency in A&E, in a climate of austerity, and its effects on the experiences and practices of healthcare professionals. It uses the empirical data as a springboard to highlight the role of structures and regulations, in this case targets and protocols, in how core healthcare ethical values, such as empathy, are exercised in practice. It provides an analysis of the normative role structures and regulations can play on the perception and practice of professional duties and obligations in healthcare. (shrink)

Examining the ways and extent to which systemic factors affect health outcomes with regard to quality, affordability and access to curative healthcare, this explorative book compares the relative merits of tax-funded Beveridge systems and insurance-based Bismarck systems. The Law and Policy of Healthcare Financing charts and compares healthcare system outcomes throughout 11 countries, from the UK to Colombia. Thematic chapters investigate the economic and legal explanations for the relevant similarities, variations and trends across the globe. Concluding that (...) systemic factors may be less significant than previously believed, this comprehensive book notes that no one system consistently outperforms the others, yet incentives and funding improvements may lift performances across all curative healthcare systems. Analytical and comparative, this book will be of interest to academics working in the fields of health law and health economics. Public authorities including health ministries, policymakers and international health organisations will also find this to be an invaluable resource. (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the (...) context of a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS I. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[i] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[ii] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. II. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[iii] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[iv] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[v] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[vi] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[vii] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[viii] In democratic societies, one must take into consideration community morals and values.[ix] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[x] III. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[xi] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[xii] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[xiii] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[xiv] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. IV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[xv] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[xvi] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[xvii] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[xviii] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[xix] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[xx] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[xxi] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. VI. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[xxii] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[xxiii] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[xxiv] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. VII. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [i] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [ii] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [iii] Moss, p. 1295-1298. [iv] Moss, p. 1296. [v] Moss, p. 1295-1298. [vi] Moss, p. 1295-1298. [vii] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [viii] Cohen, p. 1299-1301. [ix] Moss, p. 1297. [x] Cohen, p. 1300. [xi] Cappelen, p. 478-480. [xii] Cappalen, p. 478-480. [xiii] Cappelen, p.479. [xiv] Cappelen, p. 479. [xv] Cappelen, p. 479 [xvi] Cohen, p. 1301. [xvii] Cappelen, p. 478. [xviii] Cohen, p. 1299-1301. [xix] Cohen, p. 1301. [xx] Cappelen, p. 476-480. [xxi] Cappelen, p. 476-480. [xxii] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [xxiii] Kawachi, p. 18-33. [xxiv] Kawachi, p. 18-33. (shrink)

This article focuses on healthcare ethics discussions in Estonia. We begin with an overview of the reform policies that the healthcare institutions have undergone since the region regained independence from the Soviet Union in 1991. The principles of distributing healthcare services and questions regarding just what ethical healthcare should look like have received abundant coverage in the national media. An example of this is the exceptionally public case of V—a woman with leukemia whose expensive drugs the (...) national health insurance fund refused to compensate. In our subsequent discussion, we focus on a grand-scale local healthcare and research project—the Estonian Genome Project—that attempts to include 1 million DNA samples into one database. (shrink)

When advocates of insurance‐privatization consider whether private insurance‐dominated systems achieve justice at all, they tend to rely on an incomplete set of criteria for a just healthcare system. They also mistakenly assume that it is enough to show that justice is in principle achievable within a private insurance‐dominated system. This essay offers a more complete set of criteria for a just healthcare system. It then argues that the motivational assumptions needed to make insurance‐privatization at all plausible (on grounds (...) of choice, efficiency, and quality of care) are inconsistent with the motivational assumptions needed to show that in practice a private insurance‐dominated system will achieve justice. A private insurance‐dominated system can be expected to satisfy the criteria for just healthcare only if (a) there is extensive and effective regulation to constrain the normal competitive behavior of private insurers or if (b) generous public funds are provided to fill the gaps in access left by the private insurance market. Yet the assumptions about the motivations and abilities of the public, regulators, and public officials needed to satisfy conditions (a) or (b) contradict the privatization advocate's explanations of how privatization will maximize efficiency, choice, and quality of care. (shrink)

Healthcare counts as a morally relevant good whose distribution should neither be left to the free market nor be simply imposed by governmental decisions without further justification. This problem is particularly prevalent in the current boom of anti-ageing medicine. While the public demand for medical interventions which promise a longer, healthier and more active and attractive life has been increasing, public healthcare systems usually do not cover these products and services, thus leaving their allocation to the mechanisms of (...) supply and demand on the free market. This situation raises the question on which basis the underlying preferences for and claims to a longer, healthier life should be evaluated. What makes anti-ageing medicine eligible for public funding? In this article, we discuss the role of anti-ageing medicine with regard to the scope and limits of public healthcare. We will first briefly sketch the basic problem of justifying a particular healthcare scheme within the framework of a modern liberal democracy, focusing on the challenge anti-ageing interventions pose in this regard. In the next section, we will present and discuss three possible solutions to the problem, essentialistic, transcendental, and procedural strategies of defining the scope of public healthcare. We will suggest a procedural solution adopting essentialistic and transcendental elements and discuss its theoretical and practical implications with regard to anti-ageing medicine. (shrink)

An increasing number of non-governmental organisations provide humanitarian assistance, including healthcare. Some faith-based NGOs combine proselytising work with humanitarian aid. This can result in ethical dilemmas that are rarely discussed in the literature. The article explores several ethical issues, using four generic activities of faith-based NGOs: It is discriminatory to deny aid to a needy community because it provides less opportunity for proselytising work. Allocating aid to a community with fewer health needs but potential for proselytising work is unjust, (...) since it neither maximises welfare nor assists the most needy . Faith-based-NGOs may state that proselytising work combined with humanitarian assistance improves spiritual wellbeing and overall benefit. However, proselytising work creates religious doubts, which could transiently decrease wellbeing. Proselytising work is unlikely to be a perceived need of the population and, if carried out without consent, breaches the principle of autonomy. Such work also exploits the vulnerability of disaster victims. Governments that decline the assistance of a faith-based NGO involved in proselytising work may deprive the needy of aid. Three strategies are proposed: Increase knowledge to empower communities, individuals and governments; information on NGOs could be provided through an accessible register that discloses objectives, funding sources and intended spiritual activities. Clearly demarcate between humanitarian aid from proselytising work, by setting explicit guidelines for humanitarian assistance. Strengthen self-regulation by modifying the Code of Conduct of the Red Cross to state criteria for selecting communities for assistance and procedures for proselytising work. (shrink)

Photo by Tingey Injury Law Firm on Unsplash ABSTRACT The coverage of healthcare costs allegedly brought about by people’s own earlier health-adverse behaviors is certainly a matter of justice. However, this raises the following questions: justice for whom? Is it right to take people’s past behaviors into account in determining their access to healthcare? If so, how do we go about taking those behaviors into account? These bioethical questions become even more complex when we consider them in the (...) context of a commitment to publicly funded, universal healthcare coverage. INTRODUCTION Healthcare coverage of lifestyle-related conditions is certainly a matter of justice. However, this raises the following justice-related question: Is it right to consider people’s past behaviors in determining their access to healthcare? If so, the methods of taking those behaviors into account must be fair and justifiable. This bioethical question becomes even more complex when we consider it in the context of a commitment to publicly funded, universal healthcare coverage. This paper takes an old, classic debate, evaluates newer approaches, and offers an argument favoring a combined approach which alters the liberal-egalitarian solution to account for social justice. ANALYSIS l. Causes of Disease If healthcare coverage were universal, irrespective of socioeconomic status and lifestyle, people would contribute to the cost of remedying the lifestyle-induced health problems of others. In the West, lifestyle-related diseases are burdensome.[1] This paper approaches this concern from a western lens that incorporates both a European tradition of “social safety nets” and an American tradition of personal freedoms. By taking such an approach, solutions to the consequences of one’s past behavior burdening others must consider an individual’s personal freedom to choose to act as he or she wishes, with the distributive social and economic equality of the many. The concept of disease caused by lifestyle and diet is proven. Many health conditions include behavioral risk factors. Multi-pack smoking increases the risk of chronic lung disease, while obesity increases the risk of type 2 diabetes. Inattention to high blood pressure, high cholesterol, and a lack of exercise leads to increased risks of coronary artery disease.[2] While poor lifestyle choices certainly influence these conditions, their causes are multifactorial, and it is difficult to say that any single string of poor choices led to their development. In a scenario where two men excessively eat fast food for 20 years, several discrete factors impact whether any of them might suffer an ischemic-embolic stroke or not. Genetics, circumstances, and activity will also contribute to outcomes. ll. Alcohol-Related End-Stage Liver Disease One paper suggests that alcohol-related end-stage liver disease (ARESLD) differs from other multifactorial disorders as alcohol alone causes the disease.[3] It justifies attributing personal responsibility to patients with ARESLD because the condition develops only after the cumulative effects of large quantities of alcohol consumed from years to decades.[4] However, the paper undermines its position by admitting that even the susceptibility to becoming an alcoholic has some degree of genetic predisposition.[5] Given the extreme scarcity of donor livers, some patients may be prioritized over others on the transplant waiting list. Since donor livers cannot be given to everyone, transplanting a liver into an alcoholic may result in death for competing candidates whose liver disease was not their fault. All else being equal, if bioethicists avoid claiming moral deficiency or judgment, those with apparently self-inflicted ARESLD will not be deprived of treatment but will have a lower priority for transplant.[6] In contrast, another position suggests that it is often difficult to define what behaviors are punishable as these are largely personal and value-laden.[7] Still, people do not support using their own resources to support the consequences of others’ poor choices, no matter how objective.[8] In democratic societies, one must take into consideration community morals and values.[9] Even if we were to punish people for their health-adverse behaviors, we could not logistically employ the vigorous and sustained efforts necessary to determine whose actions are morally weak.[10] lll. The Liberal-Egalitarian Proposal One past argument proposes a liberal-egalitarian solution to manage personal responsibility for so-called “lifestyle diseases.”[11] This Rawlsian system combines the European-style “social safety net” commitment to social and economic equality with the American liberal notion of pluralist toleration and personal freedoms. This idealized system aims to hold people responsible for their choices rather than the consequences to mitigate the downside of blaming those who might not be blameworthy. The approach avoids determining the questionable nature of luck and personal responsibility for health outcomes, fairness in the distribution of economic burden, and the intrusiveness required to practically determine who acts in a morally wrong and health-adverse way. The liberal-egalitarian model, a theory of distributive justice, has two facets: the liberal principle that people should be held accountable for their choices and the egalitarian principle that people who make the same choices should have the same outcomes.[12] This model attempts to fuse responsibility with equity by seeking to reward good behavior and tax bad behavior rather than punish the consequences of the action and navigate who deserves treatment. For instance, the hospital bedside is not the appropriate place to introduce responsibility for one’s health outcomes.[13] This appeals to the reality that, at that time, discerning the true causes of disease was not plausible and to humanity in avoiding a heartless and cruel approach. An argument in favor of the liberal-egalitarian model considers its method of implementation. This approach assumes that the healthcare system treats all individuals regardless of their choices or ability to cover costs. The liberal-egalitarian model also assumes that a certain adverse health condition is related, statistically speaking, to the consumption of a certain good and that good can be taxed. As such, it proposes to tax the consumption of that good to finance the collective burden which arises from that good’s consumption rather than require individuals to pay for their own treatment. In the example of ARESLD, the recommended solution would be taxing all alcohol. While a systematic infrastructure is not explicit, there is the implication that a per-unit tax can be imposed on alcohol so the total tax revenue would make up for the additional healthcare costs due to consumption.[14] Upholding the principle that all people who make the same choices should face the same costs, all consumers of alcohol would pay the same tax, regardless of factors such as genetic predisposition to alcoholism, lifestyle, or expected cost of treatment. Upholding the principle of individual responsibility, this model does not deny treatment to anyone, neutralizing factors outside that individual’s control by imposing the tax ex-ante. Other people are not burdened by those who consume the good. People who consume alcohol face a burden proportional to the amount consumed. This tax-based implementation is justified so long as the tax is not prohibitively high for the average consumer. Further, the model mitigates concerns over the intrusiveness of ascribing morality to health-adverse behaviors. lV. Moral and Social Arguments Against the Liberal-Egalitarian Position Arguments against the liberal-egalitarian model concerns its many assumptions. First, this model assumes that consumption of such goods is directly related to the health outcome and that these goods can be taxed.[15] Certain people genetically predisposed to alcoholism would be predisposed to consume more alcohol. The model falls short when applied to scenarios where health outcomes are not consumption-based, such as engaging in unsafe sex or abstaining from healthy lifestyle choices like exercise. Second, some might argue that the liberal-egalitarian model fails to remain neutral. Residual moral judgments tied to consumption choices introduce non-neutrality. Although taxation in free societies is determined by democratic procedures rather than by individuals in the healthcare system, moral and value-based judgments will be implicit in deciding what behaviors are taxable, such as the purchase of cigarettes. Third, the liberal-egalitarian model fails to determine whether one’s behavior is autonomous, as socio-cultural-economic factors may influence it and behavior is more a product of society, peer pressure, or income. Those also may reflect systemic inequalities. Therefore, this model, which rewards, or taxes based solely on decisions, regardless of their consequences and motivations, fails to consider that a person’s decisions may not be completely autonomous. V. Libertarian Arguments Against the Liberal-Egalitarian Model a. State Intrusiveness as Counter to the Liberal-Egalitarian Model Last, there is a libertarian worry that if the state guarantees universal healthcare coverage to all people, the state will have to become highly intrusive and investigate people’s morals.[16] At least one-third of all disease burden in North America, Europe, and the Asia-Pacific is attributable to lifestyle measures such as tobacco smoking, alcohol consumption, high cholesterol, and obesity.[17] With these various lifestyles, it is not likely to agree on what conduct to tax or condemn.[18] The fine-toothed comb required to determine whether each citizen has been engaging in these behaviors would intrude on daily life and personal freedom. Libertarians champion the argument that impractical intrusiveness would result from universal healthcare, and such a degree of intrusiveness would likely be universally unacceptable.[19] The liberal-egalitarian model mitigates the libertarian worry about state intrusiveness as it does not involve prying into one’s life and choices other than taxing goods. A liberal state should ideally be neutral to how people decide to live their lives. In all, libertarians can rest assured that the liberal-egalitarian tax-based model, through its ex-ante implementation, will require no prying state eyes. States that provide universal healthcare coverage and wish to condemn certain misconduct do not need to become overly intrusive to carry out measures to hold individuals accountable. b. Fairness Another libertarian worry regarding the guarantee of universal healthcare coverage in the context of lifestyle-driven diseases is that the public will be burdened unfairly with covering others’ ill-advised mistakes or bad luck. An ideal system to address this worry would link treatment or payment for treatment with whatever behavior caused that need.[20] The distribution of burdens should be linked to how different individuals contributed to the creation of those burdens. Applied to health policy, we should ask how the need for a certain treatment arose when determining how to distribute its cost.[21] The liberal-egalitarian model aspires to hold individuals responsible for their choices, not for the consequences of such choices. This model significantly mitigates the libertarian worry over unfair burdens for covering other people’s mistakes or social conditions, which lead to those bad outcomes, by ensuring to not burden others with any of the costs for the treatment of people who decide to engage in certain health-adverse behaviors. The aforementioned taxation-based system would only tax those who also engage in the health-adverse behavior through consumption, and that tax directly pays for the necessary collective treatment. As such, those who do not consume the good are not involved with the payment scheme, while those who do consume the good are responsible for payment in a matter proportional to the amount of the good they have consumed. Vl. Universal Coverage Taking a step back, one should consider whether these worries regarding the coverage of apparently self-inflicted health conditions in the context of universal healthcare are worthwhile issues. One perspective raises what is called the culturally imagined objection — an idea erroneously held by many that sick people, especially those who are poor and uneducated, bring these illnesses upon themselves due to poor decision-making and irresponsible risk-taking.[22] This perspective critiques the uniquely American view that, since individuals are free to choose their lifestyles, they should bear the costs of their lifestyle.[23] Taking this argument further, some (perhaps the strongly libertarian) would say that the poor health status among many individuals is the price individuals must pay for their American way of life and the liberty and freedom to live as they wish. However, people should not completely punish individuals for their health-adverse behaviors because these choices are largely pre-determined by a person’s socioeconomic influences.[24] The outcomes from these allegedly ill-advised behaviors, which largely affect poorer people, are not just poor behavior but rather a public health crisis. Perhaps the state and its people should take collective responsibility and cover the costs of treatment for those health outcomes without question, as a form of public service. Rather than worrying about accountability and taxing bad behavior or intrusiveness into personal decisions, some might argue that people need to collectively take responsibility for reducing the overarching systemic inequalities and covering the associated treatment costs as a measure of public health. Vll. Proposed Solution Given the strengths of the liberal-egalitarian model and taking into account libertarian and social justice-oriented objections, an ideal solution for the coverage of lifestyle-related health problems needs to consider the complex relationship between a person’s behaviors and their apparent health outcomes. It must consider how society as a whole passes judgment on behaviors and how to take into account that many health-adverse decisions are not truly autonomous decisions, as various genetic and socioeconomic factors influence them. An ideal solution combines the liberal-egalitarian tax-based model with the social justice concerns of universal coverage. Whatever the cost for the treatment of medical issues resulting in part or entirely from lifestyle and diet, taxes collected from spending associated with the behavior (like the purchase of alcohol, junk food, and cigarettes) ex-ante should fund 50 percent of the cost of treatment, while the universal healthcare taxation scheme should include the other 50 percent. Such a system would provide an incentive to avoid the purchases that can lead to unhealthy consumption and make healthier choices, slightly punish and discourage such purchases through taxation, yet not overly punish people whose outcomes may have more to do with socioeconomic factors and genetics. Adding public responsibility demonstrates acknowledgement that health care is in the public interest and can mitigate public health inequalities. This solution would fuse personal responsibility with the public responsibility of state-sponsored social improvement while ensuring that all people have fair access to necessary treatment, no matter their ability to pay. CONCLUSION The 50-50 system this paper proposes reflects both justice and personal responsibility in covering healthcare costs allegedly brought about by people’s own health-adverse behaviors. By allocating tax revenue from consumption that contributes or even alone causes poor health outcomes, such a system incorporates personal responsibility. By using general tax revenue for health care, such a system would meet the libertarian requirement of providing care without any moral investigation of past behaviors and the social justice consideration of providing health care to those who may have unwittingly ventured into ill-health due to systemic injustice, socioeconomics, or genetics. - [1] Cappelen, A. W. (2005). Responsibility in health care: A liberal egalitarian approach. Journal of Medical Ethics, 31(8), 476–480. https://doi.org/10.1136/jme.2004.010421 [2] Moss, A. H. (1991). Should alcoholics compete equally for liver transplantation? JAMA: The Journal of the American Medical Association, 265(10), 1295–1298. https://doi.org/10.1001/jama.1991.03460100097032 [3] Moss, p. 1295-1298. [4] Moss, p. 1296. [5] Moss, p. 1295-1298. [6] Moss, p. 1295-1298. [7] Cohen, C. IS THIS SUPPOSED TO BE COHEN AND BENJAMIN (1991). Alcoholics and liver transplantation. JAMA: The Journal of the American Medical Association, 265(10), 1299–1301. https://doi.org/10.1001/jama.1991.03460100101033 [8] Cohen, p. 1299-1301. [9] Moss, p. 1297. [10] Cohen, p. 1300. [11] Cappelen, p. 478-480. [12] Cappalen, p. 478-480. [13] Cappelen, p.479. [14] Cappelen, p. 479. [15] Cappelen, p. 479 [16] Cohen, p. 1301. [17] Cappelen, p. 478. [18] Cohen, p. 1299-1301. [19] Cohen, p. 1301. [20] Cappelen, p. 476-480. [21] Cappelen, p. 476-480. [22] Kawachi, I. (2005). Why the United States is not number one in Health. Healthy, Wealthy, and Fair, 18–33. https://doi.org/10.1093/acprof:oso/9780195170665.003.0013 [23] Kawachi, p. 18-33. [24] Kawachi, p. 18-33. (shrink)

Background Healthcare systems are increasingly struggling with resource constraints, given demographic changes, technological development, and citizen expectations. The aim of this article is to normatively analyze different suggestions regarding how publicly financed plastic surgery should be delineated in order to identify a well-considered, normative rationale. The scope of the article is to discuss general principles and not define specific conditions or domains of plastic surgery that should be treated within the publicly financed system. Methods This analysis uses a reflective (...) equilibrium approach, according to which considered normative judgements in one area should be logically and argumentatively coherent with considered normative judgements and background theories at large within a system. Results and conclusions In exploring functional versus non-function conditions, we argue that it is difficult to find a principled reason for an absolute priority of functional conditions over non-functional conditions. Nevertheless, functional conditions are relatively easier to establish objectively, and surgical intervention has a clear causal effect on treating a functional condition. Considering non-functional conditions that require plastic surgery [i.e., those related to appearance or symptomatic conditions ], we argue that the patient needs to experience some degree of suffering, which must be ‘validated’ in some form by the healthcare system. This validation is required for both functional and non-functional conditions. Functional conditions are validated by distinguishing between statistically normal and abnormal functioning. Similarly, for non-functional conditions, statistical normality represents a potential method for distinguishing between what should and should not be publicly funded. However, we acknowledge that such a concept requires further development. (shrink)

Background Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and (...) research ethics boards reflecting on and dealing with these issues. Methods We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. Results We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. Conclusions We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics. (shrink)

In an earlier piece in these pages, I described the health effects of the still massive problem of global poverty: The poor worldwide face greater environmental hazards than the rest of us, from contaminated water, filth, pollution, worms, and insects. They are exposed to greater dangers from people around them, through traffic, crime, communicable diseases, sexual violence, and potential exploitation by the more affluent. They lack means to protect themselves and their families against such hazards, through clean water, nutritious food, (...) satisfactory hygiene, necessary rest, adequate clothing, and safe shelter. They lack the means to enforce their legal rights or to press for political reform. (shrink)

The development of new effective but expensive medical treatments leads to discussions about whether and how such treatments should be funded in solidarity-based healthcare systems. Solidarity is often seen as an elusive concept; it appears to be used to refer to different sets of concerns, and its interrelations with the concept of justice are not well understood. This paper provides a conceptual analysis of the concept of solidarity as it is used in discussions on the allocation of healthcare (...) resources and the funding of expensive treatments. It contributes to the clarification of the concept of solidarity by identifying in the literature and discussing four uses of the concept: (1) assisting patients in need, (2) upholding the solidarity-based healthcare system, (3) willingness to contribute and (4) promoting equality. It distinguishes normative and descriptive uses of the concept and outlines the overlap and differences between solidarity and justice. Our analysis shows that the various uses of the concept of solidarity point to different, even conflicting, ethical stances on whether and how access to effective, expensive treatments should be provided. We conclude that the concept of solidarity has a role to play in discussions on the accessibility and funding of newly approved medical treatments. It requires, for instance, that healthcare policies promote and maintain both societal willingness to contribute to the care of others and the value of providing care to vulnerable patients through public funding. (shrink)

The development of new effective but expensive medical treatments leads to discussions about whether and how such treatments should be funded in solidarity-based healthcare systems. Solidarity is often seen as an elusive concept; it appears to be used to refer to different sets of concerns, and its interrelations with the concept of justice are not well understood. This paper provides a conceptual analysis of the concept of solidarity as it is used in discussions on the allocation of healthcare (...) resources and the funding of expensive treatments. It contributes to the clarification of the concept of solidarity by identifying in the literature and discussing four uses of the concept: (1) assisting patients in need, (2) upholding the solidarity-based healthcare system, (3) willingness to contribute and (4) promoting equality. It distinguishes normative and descriptive uses of the concept and outlines the overlap and differences between solidarity and justice. Our analysis shows that the various uses of the concept of solidarity point to different, even conflicting, ethical stances on whether and how access to effective, expensive treatments should be provided. We conclude that the concept of solidarity has a role to play in discussions on the accessibility and funding of newly approved medical treatments. It requires, for instance, that healthcare policies promote and maintain both societal willingness to contribute to the care of others and the value of providing care to vulnerable patients through public funding. (shrink)

The rapid development in healthcare technologies in recent years has resulted in the need for health services, whether publicly funded or insurance based, to identify means to maximise the benefits and provide equitable distribution of limited resources. This has resulted in the need for rationing decisions, and there has been considerable debate regarding the substantive and procedural ethical principles that promote distributive justice when making such decisions. In this paper, I argue that while the scientifically rigorous approaches of evidence-based (...) healthcare are claimed as aspects of procedural justice that legitimise such guidance, there are biases and distortions in all aspects of the process that may lead to epistemic injustices. Regardless of adherence to principles of distributive justice in the decision-making process, evidential failings may undermine the fairness and legitimacy of such decisions. In particular, I identify epistemic exclusion that denies certain patient and professional groups the opportunity to contribute to the epistemic endeavour. This occurs at all stages of the process, from the generation, analysis and reporting of the underlying evidence, through the interpretation of such evidence, to the decision-making that determines access to healthcare resources. I further argue that this is compounded by processes which confer unwarranted epistemic privilege on experts in relation to explicit or implicit value judgements, which are not within their remit. I suggest a number of areas in which changes to the processes for developing, regulating, reporting and evaluating evidence may improve the legitimacy of such processes. (shrink)

Since 2000, 11 human uterine transplantation procedures (UTx) have been performed across Europe and Asia. Five of these have, to date, resulted in pregnancy and four live births have now been recorded. The most significant obstacles to the availability of UTx are presently scientific and technical, relating to the safety and efficacy of the procedure itself. However, if and when such obstacles are overcome, the most likely barriers to its availability will be social and financial in nature, relating in particular (...) to the ability and willingness of patients, insurers or the state to pay. Thus, publicly funded healthcare systems such as the UK9s National Health Service (NHS) will eventually have to decide whether UTx should be funded. With this in mind, we seek to provide an answer to the question of whether there exist any compelling reasons for the state not to fund UTx. The paper proceeds as follows. It assumes, at least for the sake of argument, that UTx will become sufficiently safe and cost-effective to be a candidate for funding and then asks, given that, what objections to funding there might be. Three main arguments are considered and ultimately rejected as providing insufficient reason to withhold funding for UTx. The first two are broad in their scope and offer an opportunity to reflect on wider issues about funding for infertility treatment in general. The third is narrower in scope and could, in certain forms, apply to UTx but not other assisted reproductive technologies (ARTs). The first argument suggests that UTx should not be publicly funded because doing so would be inconsistent with governments’ obligations to prevent climate change and environmental pollution. The second claims that UTx does not treat a disorder and is not medically necessary. Finally, the third asserts that funding for UTx should be denied because of the availability of alternatives such as adoption and surrogacy. (shrink)

The Danish healthcare system must meet the need for easy and equal access to healthcare for every citizen. However, investigations have shown unfair prioritization of cancer patients and unfair prioritization of resources for expensive medicines over care. What is needed are principles for proper prioritization. This article investigates whether American ethicists Tom Beauchamp and James Childress’s principle of justice may be helpful as a conceptual framework for reflections on prioritization of expensive biological therapies in the Danish healthcare (...) system. We present an empirical study exploring the principles for prioritizing new expensive biological therapies. This study includes qualitative interviews with key Danish stakeholders experienced in antibody therapy and prioritizing resources for expensive medicines. Beauchamp and Childress’s model only covers government-funded primary and acute healthcare. Based on the interviews, this study indicates that to be helpful in a Danish context this model should include equal access for citizens to government-funded primary and acute healthcare, costly medicine, and other scarce treatments. We conclude that slightly modified, Beauchamp and Childress’s principle of justice might be useful as a conceptual framework for reflections on the prioritization of expensive biological therapies in the Danish healthcare system. (shrink)

Understanding how healthcare responsibility is distributed will give insight on how health‐care is delivered and how members of a society are expected to practice health‐care. The raising cost of health‐care has resulted in restructuring of the existing Canadian healthcare system toward a system that controls costs by placing more healthcare responsibility on the individual. This shift might create more difficulty for immigrants and refugees to obtain equitable health‐care and put blame on them when they experience illness. This (...) paper is drawn from the results of a larger qualitative study exploring Vietnamese Canadian women's breast cancer and cervical cancer screening practices. Interview data were gathered from 15 Vietnamese Canadian women and six healthcare providers. We will demonstrate that (a) despite the strong influence of individualism, Vietnamese women and their healthcare providers value both individual liberty and the interrelationship between individual and society; (b) limited funding and unequal distribution of healthcare resources impacted how immigrant and refugee women practice health‐care. Thus, motivating and fostering immigrant and refugee women's healthcare practice require both individual and institutional effort. To foster immigrant and refugees’ healthcare practices, healthcare policy makers and providers need to consider how to distribute healthcare resources that meet immigrants’ and refugees’ healthcare needs in the most equitable way. (shrink)

In modern representative democracies, much healthcare is publicly funded or provided and so the question of what healthcare systems should do is a matter of public policy. Given that public resources are inevitably limited, what should be done and who should benefit from healthcare? It is a dilemma for policymakers and a subject of debate within several disciplines, but rarely across disciplines. In this paper, I draw on thinking from several disciplines and especially philosophy, economics, and systems (...) theory. I conclude that economist and philosopher John Broome’s writing provides the framework for an answer: a healthcare system in a democracy should do as much good as possible, although sometimes we should sacrifice some overall good for the sake of fairness. This leaves open some detailed questions about what in practice we consider to be good and fair, and about when some good should be traded off in order to be fair. The answers to these questions depend on our values, or as explained by systems theory, our weltanschauung. How policy decisions should be made when citizens’ values differ is a subject of extensive academic debate. However, it is a separate question. Representative democracies have mechanisms for resolving such debates. (shrink)

Researchers have recently provided proof of concept for uterus transplantation, giving rise to a discussion about priority setting. This article analyses whether absolute uterine‐factor infertility (AUFI), the main indication for uterus transplantation, gives rise to a healthcare need and the extent to which such a need places justified claims on public funding in a needs‐based welfare system. It is argued that, regardless of the concept of health to which one subscribes, there is a healthcare need for uterus (...) transplantation in women with AUFI. The provision of alternative ways of addressing this need, such as surrogacy and adoption, reduces its severity. Hence, where such alternatives are publicly funded, uterus transplantation is unlikely to become cost‐effective. However, where surrogacy and adoption are not publicly funded, uterus transplantation should be given a similar priority level to other assisted reproductive technologies. In these circumstances, public funding for uterus transplants may well be justified, particularly in well‐funded healthcare system with relatively generous cost‐effectiveness thresholds. (shrink)

Clinical guidelines summarise available evidence on medical treatment, and provide recommendations about the most effective and cost-effective options for patients with a given condition. However, sometimes patients do not desire the best available treatment. Should doctors in a publicly-funded healthcare system ever provide sub-optimal medical treatment? On one view, it would be wrong to do so, since this would violate the ethical principle of beneficence, and predictably lead to harm for patients. It would also, potentially, be a misuse of (...) finite health resources. In this paper, we argue in favour of permitting sub-optimal choices on the basis of value pluralism, uncertainty, patient autonomy and responsibility. There are diverse views about how to evaluate treatment options, and patients’ right to self-determination and taking responsibility for their own lives should be respected. We introduce the concept of cost-equivalence, as a way of defining the boundaries of permissible pluralism in publicly-funded healthcare systems. As well as providing the most effective, available treatment for a given condition, publicly-funded healthcare systems should provide reasonable suboptimal medical treatments that are equivalent in cost to the optimal treatment. We identify four forms of cost-equivalence, and assess the implications of CE for decision-making. We evaluate and reject counterarguments to CE. Finally, we assess the relevance of CE for other treatment decisions including requests for potentially superior treatment. (shrink)

In modern representative democracies, much healthcare is publicly funded or provided and so the question of what healthcare systems should do is a matter of public policy. Given that public resources are inevitably limited, what should be done and who should benefit from healthcare? It is a dilemma for policymakers and a subject of debate within several disciplines, but rarely across disciplines. In this paper, I draw on thinking from several disciplines and especially philosophy, economics, and systems (...) theory. I conclude that economist and philosopher John Broome’s writing provides the framework for an answer: a healthcare system in a democracy should do as much good as possible, although sometimes we should sacrifice some overall good for the sake of fairness. This leaves open some detailed questions about what in practice we consider to be good and fair, and about when some good should be traded off in order to be fair. The answers to these questions depend on our values, or as explained by systems theory, our weltanschauung. How policy decisions should be made when citizens’ values differ is a subject of extensive academic debate. However, it is a separate question. Representative democracies have mechanisms for resolving such debates. (shrink)

In November 2018, the practice of health care ethics consultation crossed a major threshold when 138 candidates took the inaugural Healthcare Ethics Consultant Certification Examination. This accomplishment, long in the making, has had and continues to have both advocates and critics. The Healthcare Ethics Consultant Certification Commission, a functionally autonomous body created and funded by the American Society for Bioethics and Humanities, was charged with overseeing creation of the certification process, developing the exam, and formulating certification standards and (...) policies to assess candidates’ qualifications. In this essay, as members of the commission, we describe the process of developing, administering, and scoring the certification examination as well as the historical context and the outlook for certification. By detailing the decisions and actions of the commission, we aim to provide a transparent account of the commission's efforts to develop a psychometrically sound, reliable, and secure examination through a deliberative, fair, and data‐driven process. (shrink)

Background: In view of the increasing complexity of research ethics committee applications and thus the time and expense involved in completing the forms, continual monitoring of outcome of clinical research studies for which ethics applications have been submitted is essential in determining whether resources are being effectively used, or alternatively whether significant numbers of research proposals are abandoned because of lack of funding or manpower. Previously published surveys for which data are available examined outcome of studies receiving REC approval (...) 10 or more years ago.Methods: A prospective questionnaire-based survey sent out in July 2006 to all 506 principal investigators who submitted research ethics applications to nine Greater Manchester RECs between April 2004 and March 2005. Data on the outcome of REC applications, and the status of the research study were collected and analysed.Results: 288 of the 506 questionnaires were returned. 97% of REC applications were approved, and 87% of studies were in progress or had been completed 1–2 years after approval had been granted. Researchers employed by universities, healthcare and the pharmaceutical industry had similar rates of success in initiating research studies.Conclusions: This survey suggests that most research studies submitted to RECs in Manchester, UK are approved and initiated. (shrink)

BackgroundThe public and healthcare workers have a high expectation of animal research which they perceive as necessary to predict the safety and efficacy of drugs before testing in clinical trials. However, the expectation is not always realised and there is evidence that the research often fails to stand up to scientific scrutiny and its 'predictive value' is either weak or absent.DiscussionProblems with the use of animals as models of humans arise from a variety of biases and systemic failures including: (...) 1) bias and poor practice in research methodology and data analysis ; 2) lack of transparency in scientific assessment and regulation of the research; 3) long-term denial of weaknesses in cross-species translation; 4) profit-driven motives overriding patient interests; 5) lack of accountability of expenditure on animal research; 6) reductionist-materialism in science which tends to dictate scientific inquiry and control the direction of funding in biomedical research.SummaryBias in animal research needs to be addressed before medical research and healthcare decision-making can be more evidence-based. Research funding may be misdirected on studying 'disease mechanisms' in animals that cannot be replicated outside tightly controlled laboratory conditions, and without sufficient critical evaluation animal research may divert attention away from avenues of research that hold promise for human health. The potential for harm to patients and trial volunteers from reliance on biased animal data1 requires measures to improve its conduct, regulation and analysis. This article draws attention to a few of the many forms of bias in animal research that have come to light in the last decade and offers a strategy incorporating ten recommendations stated at the end of each section on bias. The proposals need development through open debate and subsequent rigorous implementation so that reviewers may determine the value of animal research to human health. The 10Rs + are protected by a Creative Commons Attribution 3.0 Unported License and therefore may be 'shared, remixed or built on, even commercially, so long as attributed by giving appropriate credit with a link to the license, and indicate if changes were made.’. (shrink)

Development-oriented funding schemes such as the UK Global Challenges Research Fund (GCRF) have opened up opportunities for collaborations between low-middle income countries (LMICs) and high-income country (HIC) researchers. In particular, funding for medical technology research has seen a rise in previously under-represented disciplines such as physics and engineering. These collaborations have considerable potential to advance healthcare in LMICs, yet can pose challenges experienced to researchers undertaking these collaborations. Key challenges include a lack of tradition of HIC/LMIC collaborations (...) within participating departments, lack of experience with development agendas, designing contextually-appropriate technologies and ensuring long-term viability of research outputs. This paper reflects on these key challenges, using the experiences of the authors on the Open Laboratory Instrumentation (OLI) project as a focalizing lens. This project was a GCRF-funded collaboration between physicists in the UK and engineers in Tanzania to develop an open-source, 3D-printed, fully-automated laboratory microscope. The paper highlights key ethics lessons learnt. (shrink)

Development-oriented funding schemes such as the UK Global Challenges Research Fund (GCRF) have opened up opportunities for collaborations between low-middle income countries (LMICs) and high-income country (HIC) researchers. In particular, funding for medical technology research has seen a rise in previously under-represented disciplines such as physics and engineering. These collaborations have considerable potential to advance healthcare in LMICs, yet can pose challenges experienced to researchers undertaking these collaborations. Key challenges include a lack of tradition of HIC/LMIC collaborations (...) within participating departments, lack of experience with development agendas, designing contextually-appropriate technologies and ensuring long-term viability of research outputs. This paper reflects on these key challenges, using the experiences of the authors on the Open Laboratory Instrumentation (OLI) project as a focalizing lens. This project was a GCRF-funded collaboration between physicists in the UK and engineers in Tanzania to develop an open-source, 3D-printed, fully-automated laboratory microscope. The paper highlights key ethics lessons learnt. (shrink)

Development-oriented funding schemes such as the UK Global Challenges Research Fund (GCRF) have opened up opportunities for collaborations between low-middle income countries (LMICs) and high-income country (HIC) researchers. In particular, funding for medical technology research has seen a rise in previously under-represented disciplines such as physics and engineering. These collaborations have considerable potential to advance healthcare in LMICs, yet can pose challenges experienced to researchers undertaking these collaborations. Key challenges include a lack of tradition of HIC/LMIC collaborations (...) within participating departments, lack of experience with development agendas, designing contextually-appropriate technologies and ensuring long-term viability of research outputs. This paper reflects on these key challenges, using the experiences of the authors on the Open Laboratory Instrumentation (OLI) project as a focalizing lens. This project was a GCRF-funded collaboration between physicists in the UK and engineers in Tanzania to develop an open-source, 3D-printed, fully-automated laboratory microscope. The paper highlights key ethics lessons learnt. (shrink)

The difficulties faced in the recruitment and retention of nursing staff in nursing homes for older people are an international challenge. It is therefore essential that the causes of nurses’ reluctance to work in these settings are determined. This paper considers the influence that multiple‐source care funding issues have on nursing home nurses’ experiences and views regarding the practice and appeal of the role. The methodology for this study was hermeneutic phenomenology. Thirteen nurses from seven nursing homes in the (...) North East of England were interviewed in a sequence of up to five interviews and data were analysed using a literary analysis method. Findings indicate that participants are uncomfortable with the business aspects that funding issues bring to their role. The primary difficulties faced are: tensions between care issues and funding issues; challenges associated with ‘selling beds’; and coping with self‐funding residents’ changing expectations of care. The findings of the study suggest that multiple‐source care funding systems that operate in nursing homes for older people pose challenges to nursing home nurses. Some of these challenges may impact on their recruitment and retention. (shrink)

Background: Poverty and social deprivation have adverse effects on health outcomes and place a significant burden on healthcare systems. There are some actions that can be taken to tackle them from within healthcare institutions, but clinicians who seek to make frontline services more responsive to the social determinants of health and the social context of people’s lives can face a range of ethical challenges. We summarise and consider a case in which clinicians introduced a poverty screening initiative into (...) paediatric practice using the discourse and methodology of healthcare quality improvement. -/- Discussion: Whilst suggesting that interventions like the PSI are a potentially valuable extension of clinical roles, which take advantage of the unique affordances of clinical settings, we argue that there is a tendency for such settings to continuously reproduce a narrower set of norms. We illustrate how the framing of an initiative as QI can help legitimate and secure funding for practical efforts to help address social ends from within clinical service, but also how it can constrain and disguise the value of this work. A combination of methodological emphases within QI and managerialism within healthcare institutions leads to the prioritisation, often implicitly, of a limited set of aims and governing values for healthcare. This can act as an obstacle to a genuine broadening of the clinical agenda, reinforcing norms of clinical practice that effectively push poverty ‘off limits.’ We set out the ethical dilemmas facing clinicians who seek to navigate this landscape in order to address poverty and the social determinants of health. -/- Conclusions: We suggest that reclaiming QI as a more deliberative tool that is sensitive to these ethical dilemmas can enable managers, clinicians and patients to pursue health-related values and ends, broadly conceived, as part of an expansive range of social and personal goods. (shrink)

When research concludes, post-trial access to the trial intervention or standard healthcare can be crucial for participants who are ill such as those in resource-poor countries with inadequate healthcare, British participants testing ‘last-chance drugs’ unavailable on the National Health Service and underinsured US participants. Yet, many researchers are unclear about their obligations regarding the post-trial period, and many research ethics committees do not know what to require of researchers. Consequences include participants who reasonably expect but lack PTA to (...) the trial intervention, unplanned financial liabilities for NHS Trusts forced to fund this, negative press and potential to undermine public trust.1–3,iOne reason for the lack of clarity is controversy over whether and when participants should have access, after the study, to the study intervention. At one extreme is the view that continued access should be ensured when the intervention has benefited the participant or when it has proven safe and effective for the participant population, irrespective of the cost and burden of ensuring continued access. At the other extreme is the view that continued access need never be provided so long as non-availability of the study intervention post-trial was adequately disclosed when participants were invited to participate.6 There is also disagreement about when poststudy access to the study intervention should be considered beneficial for participants. The spectrum ranges from the view that the intervention should be regarded as beneficial for a proposed use only after the …. (shrink)

Homeopathic medicine is based on the two principles that “like cures like” and that the potency of substances increases in proportion to their dilution. In November 2009 the UK Parliament’s Science and Technology Committee heard evidence on homeopathy, with several witnesses arguing that homeopathic practice is “unethical, unreliable, and pointless”. Although this increasing scepticism about the merits of homeopathy is to be welcomed, the unethical effects of funding homeopathy on the NHS are even further-reaching than has been acknowledged.

No healthcare system has sufficient funds to provide the best possible treatment for all patients in all situations. Three new pharmaceutical products are licensed each month, on average, in the U.K. Most have some benefits over existing drugs but many are expensive. When is the extra benefit worth the extra cost? Managed care systems such as seen in the U.S., and publicly funded systems such as the British National Health Service (NHS), face this fundamental issue. Several governments (for example (...) those in New Zealand, Sweden, and the Netherlands) have taken a lead both in acknowledging that rationing healthcare is necessary, and in outlining how priorities are to be determined. In addition, the state of Oregon addressed the issue of rationing with considerable public involvement. (shrink)

Objective: To determine whether a moral reasoning exercise can improve response quality to surveys of healthcare priorities Methods: A randomised internet survey focussing on patient age in healthcare allocation was repeated twice. From 2574 internet panel members from the USA and Canada, 2020 (79%) completed the baseline survey and 1247 (62%) completed the follow-up. We elicited respondent preferences for age via five allocation scenarios. In each scenario, a hypothetical health planner made a decision to fund one of two (...) programmes identical except for average patient age (35 vs 65 years). Half of the respondents (intervention group) were randomly assigned to receive an additional moral reasoning exercise. Responses were elicited again 7 weeks later. Numerical scores ranging from –5 (strongest preference for younger patients) to +5 (strongest preference for older patients); 0 indicates no age preference. Response quality was assessed by propensity to choose extreme or neutral values, internal consistency, temporal stability and appeal to prejudicial factors. Results: With the exception of a scenario offering palliative care, respondents preferred offering scarce resources to younger patients in all clinical contexts. This preference for younger patients was weaker in the intervention group. Indicators of response quality favoured the intervention group. Conclusions: Although people generally prefer allocating scarce resources to young patients over older ones, these preferences are significantly reduced when participants are encouraged to reflect carefully on a wide range of moral principles. A moral reasoning exercise is a promising strategy to improve response quality to surveys of healthcare priorities. (shrink)