This book is the most comprehensive treatment available of one of the most urgent - and yet in some respects most neglected - problems in bioethics: decision-making for incompetents. Part I develops a general theory for making treatment and care decisions for patients who are not competent to decide for themselves. It provides an in-depth analysis of competence, articulates and defends a coherent set of principles to specify suitable surrogate decisionmakers and to guide their choices, examines the value of advance (...) directives, and investigates the role that considerations of cost ought to play in decisions concerning incompetents. Part II applies this theoretical framework to the distinctive problems of three important classes of individuals, many of whom are incompetent: minors, the elderly and psychiatric patients. The authors' approach combines a probing analysis of fundamental issues in ethical theory with a sensitive awareness of the concrete realities of health care institutions and the highly personal and individual character of difficult practical problems. Its broad scope will appeal to health professionals, moral philosophers and lawyers alike. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

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Some medical services have long generated deep moral controversy within the medical profession as well as in broader society and have led to conscientious refusals by some physicians to provide those services to their patients. More recently, pharmacists in a number of states have refused on grounds of conscience to fill legal prescriptions for their customers. This paper assesses these controversies. First, I offer a brief account of the basis and limits of the claim to be free to act on (...) one’s conscience. Second, I sketch an account of the basis of the medical and pharmacy professions’ responsibilities and the process by which they are specified and change over time. Third, I then set out and defend what I call the “conventional compromise” as a reasonable accommodation to conflicts between these professions’ responsibilities and the moral integrity of their individual members. Finally, I take up and reject the complicity objection to the conventional compromise. Put together, this provides my answer to the question posed in the title of my paper: “Conscientious refusal by physicians and pharmacists: who is obligated to do what, and why?”. (shrink)

How should modern medicine's dramatic new powers to sustain life be employed? How should limited resources be used to extend and improve the quality of life? In this collection, Dan Brock, a distinguished philosopher and bioethicist and co-author of Deciding for Others (Cambridge, 1989), explores the moral issues raised by new ideals of shared decision making between physicians and patients. The book develops an ethical framework for decisions about life-sustaining treatment and euthanasia, and examines how these life and death decisions (...) are transformed in health policy when the focus shifts from what is best for a patient to what is just for all patients. Professor Brock combines acute philosophical analysis with a deep understanding of the realities of clinical health policy. This is a volume for philosophers concerned with medical ethics, health policy professionals, physicians interested in bioethics, and undergraduate courses in biomedical ethics. (shrink)

The Human Genome Project will produce information permitting increasing opportunities to prevent genetically transmitted harms, most of which will be compatible with a life worth living, through avoiding conception or terminating a pregnancy. Failure to prevent these harms when it is possible for parents to do so without substantial burdens or costs to themselves or others are what J call “wrongful handicaps”. Derek Parfit has developed a systematic difficulty for any such cases being wrongs — when the harm could be (...) prevented only by preventing the existence of the individual who would have a worthwhile life even with the handicap, then bringing him into existence with the handicap does not make him worse off and so does not wrong him. I argue that a non “person‐affecting” principle requiring the avoidance of suffering and limited opportunity correctly accounts for cases of wrongful handicaps without requiring that the individuals with the handicap have been made worse off and therefore wronged. It is an advantage, not a difficulty, of this account that it does not imply that the person with the handicap has been wronged or is a victim with a special moral complaint. (shrink)

Conventional medical ethics and the law draw a bright line distinguishing the permitted practice of withdrawing life-sustaining treatment from the forbidden practice of active euthanasia by means of a lethal injection. When clinicians justifiably withdraw life-sustaining treatment, they allow patients to die but do not cause, intend, or have moral responsibility for, the patient's death. In contrast, physicians unjustifiably kill patients whenever they intentionally administer a lethal dose of medication. We argue that the differential moral assessment of these two practices (...) is based on a series of moral fictions – motivated false beliefs that erroneously characterize withdrawing life-sustaining treatment in order to bring accepted end-of-life practices in line with the prevailing moral norm that doctors must never kill patients. When these moral fictions are exposed, it becomes apparent that conventional medical ethics relating to end-of-life decisions is radically mistaken. (shrink)

It is widely recognized that prioritizing health care resources by their relative cost-effectiveness can result in lower priority for the treatment of disabled persons than otherwise similar non-disabled persons. I distinguish six different ways in which this discrimination against the disabled can occur. I then spell out and evaluate the following moral objections to this discrimination, most of which capture an aspect of its unethical character: it implies that disabled persons' lives are of lesser value than those of non-disabled persons; (...) it constitutes “double jeopardy” or violates Frances Kamm's non-linkage principle; it conflicts with equality of opportunity; it conflicts with fairness, which requires ignoring differential impacts of treatment; it wrongly gives lower priority to disabled persons for equally effective treatment; it conflicts with giving all persons an equal chance to reach their full potential; and, it is in conflict with giving priority to the worse off. (shrink)

In the months preceding the writing of this review, bioethics has been in the news a great deal. In congressional and public policy debates surrounding stem cell research, human cloning, and the Human Genome Project, bioethics and bioethicists have gained national attention and been subject to public scrutiny. Commentators have asked who these self-appointed moral experts are to tell us what is right and wrong.

This chapter examines whether an individual’s being worse off than others should be a relevant consideration in the allocation of limited medical resources. It reviews arguments pressed by proponents of different theories of justice about whether being worse off than others makes special demands on health care resource prioritization. Even if there is good reason to restrict the concern for the worse off to those with worse health in the prioritization and allocation of health care resources, additional issues remain. One (...) is how to determine who has worse health, and whether the worse off are those with the worse overall health or those with the most serious medical condition now in need of treatment. Another issue is whether only individuals’ present health, or instead their lifetime health, including past and expected future health, is relevant. (shrink)

The Human Genome Project will produce information permitting increasing opportunities to prevent genetically transmitted harms, most of which will be compatible with a life worth living, through avoiding conception or terminating a pregnancy. Failure to prevent these harms when it is possible for parents to do so without substantial burdens or costs to themselves or others are what J call “wrongful handicaps”. Derek Parfit has developed a systematic difficulty for any such cases being wrongs — when the harm could be (...) prevented only by preventing the existence of the individual who would have a worthwhile life even with the handicap, then bringing him into existence with the handicap does not make him worse off and so does not wrong him. I argue that a non “person‐affecting” principle requiring the avoidance of suffering and limited opportunity correctly accounts for cases of wrongful handicaps without requiring that the individuals with the handicap have been made worse off and therefore wronged. It is an advantage, not a difficulty, of this account that it does not imply that the person with the handicap has been wronged or is a victim with a special moral complaint. (shrink)

In this paper I will address whether the restriction on the creation of human embryos solely for the purpose of research in which they will be used and destroyed in the creation of human stem cell lines is ethically justified. Of course, a cynical but perhaps accurate reading of the new Obama policy is that leaving this restriction in place was done for political, not ethical, reasons, in light of the apparent public opposition to creating embryos for use in this (...) research. But the issue of whether the restriction is ethically justified remains important, even if only for another day in the policy arena. (shrink)

Rationing is the allocation of a good under conditions of scarcity, which necessarily implies that some who want and could be benefitted by that good will not receive it. One reflection of our ambivalence towards health care rationing is reflected in our resistance to having it distributed in a market like most other goods—most Americans reject ability to pay as the basis for distributing health care. They do not view health care as just another commodity to be distributed by markets. (...) Despite this widespread view, we are the only developed country without some form of universal health insurance, and so for the 46 million Americans without health insurance their access to health care often does depend on their ability to pay for it. Rationing largely remains a topic that the public, their elected leaders, and many health care professionals prefer to avoid. Ever-growing costs of health care will increasingly force the practice and issue of health care resource prioritization and rationing into the open for public, professional, and political attention. This paper explores some of the features of those practices and issues that make them especially ethically and politically difficult. Those issues will not be easily resolved, but avoiding them will not avoid the need or reality of rationing, it will only mean that it will go on covertly and unexamined. That will lead neither to better or more legitimate prioritization and rationing decisions. (shrink)

: Bioethics has focused principally on ethical issues arising in clinical medicine. When it has addressed justice or equity, it has focused on access to health care and on defending a general moral right to health care. This dual focus on establishing a right to health care and on health care rather than health has left bioethics largely silent on two issues of fundamental importance for a full account of justice and health. First, the focus on establishing a right to (...) health care has contributed to a failure to address difficult issues in developing ethical standards for equitably prioritizing limited resources in health care. Second, the focus on inequalities in access to health care has ignored the much greater impact of social determinants of health, in particular socioeconomic class and inequality, on health and health inequalities. Bioethics must broaden its agenda. (shrink)

The intense and extensive debate over human embryonic stem cell research has focused primarily on the moral status of the human embryo. Some commentators assign full moral status of normal adult human beings to the embryo from the moment of its conception. At the other extreme are those who believe that a human embryo has no significant moral status at the time it is used and destroyed in stem cell research. And in between are many intermediate positions that assign an (...) embryo some degree of moral status between none and full. This controversy and the respective positions, like the abortion controversy, is by now well understood, despite the lack of progress in resolving it. I have argued briefly elsewhere that early embryos do not have significant moral status, but I do not want to reenter that debate here. Instead, I want to focus on an issue that has had relatively little explicit and separate attention, but is likely to loom larger in light of the Obama administration’s partial lifting of the Bush administration’s restriction on the embryos that can be used in stem cell research that receives federal funding. (shrink)

If stem cell-based therapies are developed, we will likely confront a difficult problem of justice: for biological reasons alone, the new therapies might benefit only a limited range of patients. In fact, they might benefit primarily white Americans, thereby exacerbating long-standing differences in health and health care.

It is sometimes said that a society should be judged ethically by how it treats its least-fortunate or worst-off members. In one interpretation this is not a point about justice, but instead about moral virtues such as compassion and charity. In our response to the least fortunate among us, we display, or show that we lack, fundamental moral virtues of fellow feeling and concern for others in need. In a different interpretation, however, this point is about justice and a just (...) society—the justice of a society is shown especially in how it treats its least-fortunate members. (shrink)

In this paper I address the relation between just claims to health care and severe cognitive impairment from dementia. Two general approaches to justice in allocation of health care are distinguished – prudential allocation and interpersonal distribution. First, I analyze why a patient who has died has no further claims to health care. Second, I show why prudential allocators would not provide for health care treatment should they be in a persistent vegetative state. Third, I argue that the destruction of (...) personal identity from severe dementia implies that only claims to palliative, but not life-sustaining, health care remain. Finally, I argue that the prudential allocator approach is indeterminate regarding life-sustaining care for the moderately demented and that social policy should not deny that care to patients. Keywords: elderly, health care, the severely-demented, justice CiteULike Connotea Del.icio.us What's this? (shrink)

Review of Norman Daniels' 'Am I My Parents' Keeper?', and Daniel Callahan's 'Setting Limits'.

In 1990 the landmark Americans with Disabilities Act (ADA) became federal law with the express purpose to “establish a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities."l The act includes separate titles prohibiting discrimination on the basis of disability in employment, public services, transportation and public accommodations. Since it prohibits discrimination on the basis of disability in both public and private services and programs, in health care “it applies to programs provided by the government, (...) benefits provided by employers, and services pro- ”2 vided by physicians.Moreover, the ADA defines disability broadly to include “any.. (shrink)

We report on the deliberations of an interdisciplinary group of experts in science, law, and philosophy who convened to discuss novel ethical and policy challenges in stem cell research. In this report we discuss the ethical and policy implications of safety concerns in the transition from basic laboratory research to clinical applications of cell-based therapies derived from stem cells. Although many features of this transition from lab to clinic are common to other therapies, three aspects of stem cell biology pose (...) unique challenges. First, tension regarding the use of human embryos may complicate the scientific development of safe and effective cell lines. Second, because human stem cells were not developed in the laboratory until 1998, few safety questions relating to human applications have been addressed in animal research. Third, preclinical and clinical testing of biologic agents, particularly those as inherently complex as mammalian cells, present formidable challenges, such as the need to develop suitable standardized assays and the difficulty of selecting appropriate patient populations for early phase trials. We recommend that scientists, policy makers, and the public discuss these issues responsibly, and further, that a national advisory committee to oversee human trials of cell therapies be established. **NB we did not reccommend a NAC, we think it might be appropriate**. (shrink)