In the discussion on rationing health care in The Netherlands, a fundamental tension emerges between two ethical perspectives: liberalism and communitarianism. A Dutch government committee recently issued a report opting for a community-oriented approach. This approach proves less communitarian as compared to the views on rationing elaborated by Callahan. Moreover, the community-oriented approach is conceptualised in such a way that it seems compatible with some basic aspects of the liberal account of a just society.

The American Journal of Bioethics, Volume 11, Issue 7, Page 15-16, July 2011.

The age-rationing debate of fifteen years ago will inevitably reemerge as health care costs escalate. All age-rationing proposals should be judged in light of the current system of rationing health care by price in the U.S., and the resulting pattern of excess and deprivation. Age-rationing should be rejected as public policy, but recognized as a personal virtue of stewardship among the elderly.

Resource allocation is a central part of the decision-making process in any health care system. Resources have always been finite, thus the ethical issues raised are not new. The debate is now more open, and there is greater public awareness of the issues. It is increasingly recognised that it is the technology which determines resources. The ethical issues involved are often conflicting and relate to issues of individual rights and community benefits. One central feature of resource allocation is the basing (...) of decisions on the outcomes of health care and on their subsequent economic evaluation. The knowledge base is therefore of great importance as is the audit of results of clinical treatment. Public involvement is seen as an integral part of this process. For all parts of the process, better methodologies are required. (shrink)

Equity in health and health care is animportant issue. It has been proposed that thepursuit of equity in health care is beinghampered by the dominance of individualism inhealth care practices. This paper explores theway in which communitarian ideals and practicesmight lend themselves to the pursuit of equity.Communitarians acknowledge, respect and fosterthe bonds that unite and identify communities.The paper argues that, to achieve equity inhealth care, these bonds need to be recognisedand harnessed rather than ignored. The notionof individual autonomy in the (...) context of thecommunity is examined. Alternative concepts ofautonomy – social autonomy and communityautonomy – are seen to be more respectful andnurturing of both the individual and thecommunity. Moreover, these concepts appeardesirable for the pursuit of health care equitygoals. The paper concludes with some thoughtsabout how equity in Australia's health caresystem can reasonably progress within acommunitarian vision. Disadvantaged communitiesare discussed throughout, in particular,Australian Aboriginal communities. (shrink)

One argument which is frequently levelled against the enhancement of human biology is that we do not understand the evolved function of our bodies well enough to meddle in our biology without producing unintended and potentially catastrophic effects. In particular, this argument is levelled against attempts to slow or eliminate the processes of human ageing, or ‘senescence’, which cause us to grow decrepit before we die. In this article, I claim that even if this argument could usefully be applied against (...) attempts to enhance other human traits, it cannot be valid in the case of attempts to enhance the various processes that constitute senescence. I begin by reviewing the biology of ageing to show how it consists of a number of unrelated traits. Then, following the arguments of a number of evolutionary biologists, I explain that every one of these traits is a product of evolutionary ‘neglect’ rather than ‘intent’. Finally, I consider the strongest version of the argument against enhancing senescence, which acknowledges these facts about the evolution of ageing but insists that we have nevertheless have prudential reasons to avoid enhancement wherever there is some uncertainty about the genetics or evolutionary function of a trait. I provide two reasons for rejecting this version of the argument as well, even in the case of human senescence, where such uncertainty is currently significant. (shrink)

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers of research but largely (...) silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. -/- In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors' moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research. -/- This is an open access title available under the terms of a CC BY-NC-ND 4.0 license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. (shrink)

In a 2002 speech, Mark McClellan, a member of the Council of Economic Advisors at the White House, said that "[I]n the president's vision, all Americans should have access to high-quality and affordable healthcare." However, many healthcare researchers believe that a growing number of Americans are underinsured. Because any characterization of underinsurance will refer to the value judgments of people about what counts as "adequate" and "inadequate" healthcare, the goal of characterizing and measuring the underinsured is difficult to achieve. In (...) this article, I examine the various dimensions of underinsurance, and propose a typology incorporating those dimensions. (shrink)

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological (...) critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings. (shrink)

This essay contrasts the notions of charity employed by Traditional Christianity and by liberal cosmopolitan bioethics, arguing that: (1) bioethics attempts to reconstruct the notion of charity in a manner that is caustic to the Traditional Christian moral vision, (2) Christians are, on the whole, more charitable than proponents of bioethics' reconstructed view (even given the standards of the latter), and (3) the theistically oriented conception of charity employed by Traditional Christianity cannot be expressed in bioethics' purportedly neutral public vocabulary. (...) The upshot is that, in the name of neutrality and pluralism, liberal cosmopolitan bioethicists seek to impose an impoverished moral vocabulary that reflects liberal cosmopolitan ideology while excluding input from Traditional Christianity and other non-liberal-humanistic moral visions. (shrink)

U.S. politicians and policymakers have been preoccupied with how to pay for health care. Hardly any thought has been given to what should be paid for—as though health care is a commodity that needs no examination—or what health outcomes should receive priority in a just society, i.e., rationing. I present a rationing proposal, consistent with U.S. culture and traditions, that deals not with “health care,” the terminology used in the current debate, but with the more modest and limited topic of (...) medical care. Integral to this rationing proposal—which allows scope to individual choice and at the same time recognizes the interdependence of the individual and society—is a definition of a “decent minimum,” the basic package of medical treatments everyone should have access to in a just society. I apply it to a specific example, diabetes mellitus, and track it through a person's life span. (shrink)

Spirituality and storytelling can be resources in aging successfully and in dying well given the constraints of modern day Western culture. This paper explores the relationship of aging to time and the dynamic process of the life course and discusses issues related to confronting mortality, including suffering, finitude, spirituality, and spiritual closure in regard to death. And, finally, the role of narrative in this process is taken up.

Jeffrey Bishop’s The Anticipatory Corpse exposes a functional metaphysics at the root of contemporary medical practice that gives rise to inhumane medicine, especially at the end of life. His critique of medicine argues for alternative spaces and practices in which the communal significance of the body, its telos, can be restored and the meaning of a “good death” enriched. This essay develops an alternative epistemology of the body, drawing from Christian theological accounts of the communal or Eucharistic body and linking (...) liturgical practices to the cultivation of solidarity. It argues for an epistemology of the body that makes visible the invisible bodies at medicine’s margins and illumines the disparate worlds of health care globally. (shrink)

The authors describe the ethical considerations underlying the inclusion of mental health services into a prioritized health care system. The Oregon Health Plan is a process for defining and delivering basic health services to an entire state. As the plan was developed, the mental health community needed to decide whether or not to participate in the process and, if so, how. Lengthy discussions among mental health consumers, family members, and providers led to a strategy that emphasized the integration of mental (...) health and chemical dependency services into a comprehensive and universal health care program. This approach appears to have achieved relative parity for mental health. (shrink)

For a significant number of patients, there exists no, or only little, interest in developing a treatment for their disease or condition. Especially with regard to rare diseases, the lack of commercial interest in drug development is a burning issue. Several interventions have been made in the regulatory field in order to address the commercial disinterest in these conditions. However, existing regulations mainly focus on the provision of incentives to the sponsors of clinical trials of orphan drugs, and leave unanswered (...) the overarching question about the rightful place of orphan drugs in resource allocation systems. In this article, we analyse the ethical aspects of funding research and development in the field of rare diseases. We then propose an ethical framework that can help health policy makers move forward in the difficult matter of fairly allocating resources for the prevention, diagnosis and treatment of rare diseases. (shrink)

The American Journal of Bioethics, Volume 11, Issue 7, Page 16-18, July 2011.

A dispute exists about whether bioethics should become a new discipline with its own methods, competency standards, duties, honored texts, and core curriculum. Unique expertise is a necessary condition for disciplines. Using the current literature, different views about the sort of expertise that might be unique to bioethicists are critically examined to determine if there is an expertise that might meet this requirement. Candidates include analyses of expertise based in "philosophical ethics," "casuistry," "atheoretical or situation ethics," "conventionalist relativism," "institutional guidance," (...) "regulatory guidance and compliance," "political advocacy," "functionalism," and "principlism." None succeed in identifying a unique area of expertise for successful bioethicists that could serve as a basis for making it a new discipline. Rather expertise in bioethics is rooted in many professions, disciplines and fields and best understood as a second-order discipline. (shrink)

There are in two assumptions inherent in this issue's theme, both inimical to the traditional goals of medicine and to the standards of care it proposed. First, the idea that treatment must be limited for some (but not others) on the basis of cost was born in the early literature of bioethics. Second, that there is a quantifiable and diagnostically predictable period at the “end-of-life” where treatment is “futile,” and therefore not worth supporting in a context of scarcity grew out (...) of bioethics's construction of allocative protocols in the 1990s. This paper traces the history of these ideas as constructs grounded in neither natural scarcity nor in firm diagnostic categories. Their relation to issues of care is therefore suspect. (shrink)

Early announcements of this special journal issue solicited authors interested in contributing articles on the subject of “costs at the end of life.” Those who replied were then informed the title was being changed, on the basis of early subscriber interest, in “rational end-of-life treatment.” Because that seemed a still inadequate reflection of the authorial concerns of responding potential contributors, the editors again changed the title, two months later, to “Making Treatments More Rational and Compassionate for the Chronically Critically Ill.” (...) At that point the editors gave up and decided this issue’s final title would be determined only after the papers were submitted and reviewed. (shrink)

We analyse solidarity as a mixture of social justice on the onehand and a set of cultural values and ascriptions on the otherhand. The latter defines the relevant sense of belonging togetherin a society. From a short analysis of the early stages of theDutch welfare state, we conclude that social responsibility wasoriginally based in religious and political associations. In theheyday of the welfare state, institutions such as sick funds,hospitals or nursing homes became financed collectively entirelyand became accessible to people of (...) all denominations. Solidaritywas transformed in a more general category, related to the statusof Dutch citizenship. Responsibility was transformed tocollective responsibility.Financial pressures on the Welfare State have resulted in adebate on choices in health care and in a number of systemreforms, so far relatively small. In the surrounding discourse,justice was linked to private responsibility. Both fromgovernment officials and from participants in the societaldebate, moralistic overtones could be heard concerning the threatof overburdening of the health care system by citizens.In this paper, we develop a concept of reflexive solidarity thatlinks elements of social justice to conceptualisations ofresponsibility that address policy makers and health careinstitutions as well as citizens, in their role of carereceivers. A short analysis of the phenomenon of personal budgetsin care services should prove that our concept of reflexivesolidarity is not empty. Linked to, but beyond the concept ofjustice, issues of social responsibility can be addressed withoutmoralistic overtones. (shrink)

Professional autonomy is often described as a claim of professionalsthat has to serve primarily their own interests. However, it can also beseen as an element of a professional ideal that can function as astandard for professional, i.e. medical practice. This normativeunderstanding of the medical profession and professional autonomy facesthree threats today. 1) Internal erosion of professional autonomy due toa lack of internal quality control by the medical profession; 2)the increasing upward pressure on health care expenses that calls for ahealth care (...) policy that could imply limitations for the professionalautonomy of physicians; 3) a distorted understanding of theprofession as being based on a formal type of knowledge and relatedtechnology, in which other normative dimensions of medical practice areneglected and which frustrates meaningful communication betweenphysicians and patients. To answer these threats a normative structureanalysis of medical practice is presented, that indicates whichprinciples and norms are constitutive for medical practice. It isconcluded that professional autonomy, normatively understood, should bemaintained to avoid the lure of the technological imperative and toprotect patients against third parties' pressure to undertreatment.However, this professional autonomy can only be maintained if members ofthe profession subject their activities and decisions to a criticalevaluation by other members of the profession and by patients and ifthey continue to critically reflect on the values that regulate today'smedicine. (shrink)

This paper examines the development of medical technology in terms of Max Weber's theory of rationalization. It argues that medical technology is a part of the general process of social, political and economic changes in modern Western societies. Medical technology today keeps many people alive who, in the past, would have died from their illness. In recent years, burgeoning technological achievements in medicine have been regarded as a threat to the individual's freedom to die. Many people believe that the prolongation (...) of life only adds to the suffering of the patient and to the emotional distress of the family. They argue that a quiet death is preferable to the indignities inflicted by mechanical life support. This paper addresses these issues in light of Weber's theoretical arguments. (shrink)

The AIDS epidemic touches upon basic humanities themes: sex, death and social worth, to name just three. AIDS policy in general builds upon society's discourse on these topics. The growing Latino population (25% of California and Texas) needs an AIDS policy that builds upon the Latino humanities tradition. The contours of the Latino intellectual tradition, as focused on issues attendant to health, are presented, with examples from Aztec, colonial and modern times.

Media carry the message of the scientific community into the wider world, though sometimes it would be more appropriate to say: of a certain scientific group. For the field of bioethics, this is particularly true. From films such as Gattaca to TV series like Black Mirror, the relationship between science and science fiction appears evidently bidirectional. This relationship is not new of course, but this paper discusses quasi-science-fictional experiments such as that of Sergio Canavero and the recent TV series Altered (...) Carbon through the lenses of the philosophical background they both rely on: immortality is achievable—and it should be sought with vehemence. At least by the rich. (shrink)

Solidarity is a fundamental social value in many European countries, though its precise practical and theoretical meaning is disputed. In a health care context, I agree with European writers who take solidarity normatively to mean roughly equal access to effective health care for all. That is, solidarity includes a sense of justice. Given that, I will argue that precision medicine represents a potential weakening of solidarity, albeit not a unique weakening. Precision medicine includes 150 targeted cancer therapies (mostly for metastatic (...) cancer), all of which are extraordinarily expensive. Our critical question: Must a commitment to solidarity as defined mean that all these targeted cancer therapies should be guaranteed to all within each country in the European Union, no matter the cost, no matter the degree of effectiveness? Such a commitment would imply that cancer was ethically special, rightfully commandeering unlimited resources. That in itself would undermine solidarity. I offer multiple examples of how current and future dissemination of these targeted cancer drugs threaten a commitment to solidarity. An alternative is to fund more cancer prevention efforts. However, that too proves a threat to solidarity. Solidarity, with or without a sense of justice, is too abstract a notion to address these challenges. Further, we need to accept that we can only hope to achieve “rough justice” and “supple solidarity.” The precise practical meaning of these notions needs to be worked out through a fair and inclusive process of rational democratic deliberation, which is the real and practical foundation of just solidarity. (shrink)

What should be the content of a package of health care services that we would want to guarantee to all Americans? This question cannot be answered adequately apart from also addressing the issue of fair health care rationing. Consequently, as I argue in this essay, appeal to the language of "basic," "essential," "adequate," "minimally decent," or "medically necessary" for purposes of answering our question is unhelpful. All these notions are too vague to be useful. Cost matters. Effectiveness matters. The clinical (...) circumstances of a patient matters. But what we must ultimately determine is what we mutually agree are the just claims to needed health care of each American in a relatively complex range of clinical circumstances. Answering this question will require a public moral conversation, a fair process of rational democratic deliberation aimed at defining both just claims to needed health care and just limits. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? That question is the focus of this essay. Put another way: relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? (...) On the one hand, we might see the terminally ill as being among the “medically least well off” and therefore deserving very high priority. On the other hand, we might see them as squandering vast medical resources for marginal medical benefits, thereby denying needed resources to others who would benefit much more. We begin the essay by making a number of morally relevant distinctions with regard to the category of “being terminally ill.” We note, given contemporary medicine, that individuals may be terminally ill several times in the course of a life. Not all such circumstances make equal just claims to needed health care. We also note that our conceptions of health care justice are ultimately incapable of making very fine-grained, morally justified rationing judgments in complex medical circumstances. We conclude that we must finally rely upon fair processes of rational democratic deliberation to articulate such judgments for our own future, possibly terminally ill selves, thereby undercutting the rhetoric of “death panels.”. (shrink)

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought (...) the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them. (shrink)

Definition of the problem: Advances in medical technology resulting in an explosion of therapies available, considered within the context of the current demographic development, raise the question as to whether these advances can be made available to all in an equitable manner. Arguments: The following suggestions are being made in the discussion of how the costs can be held in check: (1) the prevention of expensive procedures being introduced into medical practice, (2) a far-reaching shifting of financing the health care (...) services into the private sector, and (3) excluding certain groups of persons from receiving expensive therapies, namely those whose ”quality of life” is considered to be very low and whose care constitutes a burden to society (e.g. the aged, the chronically ill and the handicapped). Suggestions 2 and 3 violate the basic – Christian – ethical principles of human dignity, justice and solidarity with regard to the gift of life and corresponding good health. Conclusion: The standard for the distribution of generally offered medical services must also be – with respect to persons – available for the chronically ill and for handicapped persons dependent upon care. (shrink)