Showing papers in "Hastings Center Report in 1990"

The Calculus of Consent

Abstract: The Calculus of Consent Nancy Cruzan's personal tragedy threatens to become a national one. Embracing so many fundamental and symbolic aspects of life, the question of how she dies has understandably provoked profound and diverse responses. Various arguments have sought to convince the U.S. Supreme Court to preserve either the right to life or the right to liberty, as if they were mutually exclusive and the only two interests at stake. Yet the rhetoric of rights has proven confusing, demonstrating only that "[l]ogic relentlessly and inappropriately pursued to its end can as readily lead to destructive results as can muddled emotions." [1] At issue in Cruzan is not a choice between life and liberty, but a way of life consistent with a belief in ordered liberty. Cruzan poses a basic political problem that should occasion honest introspection and a search for a solution that harmonizes conflicting concerns most consistently with the Constitution's vision of the proper relationship between individuals and the state, and of consent's role in maintaining accountability. Understanding and preserving that vision takes more than mere philological and rhetorical skill; it requires embracing an experientially shaped perspective such as guided the Constitution's framers. The Constitutional Vision Where logic alone fails us, experience must be our guide, for as Justice Holmes noted, "the life of the law has not been logic: it has been experience." Reconciling the values, explicit and implied, that the Constitution requires us to protect involves bringing the wisdom gained from experiences the framers never had, such as that derived from the history of modern medicine, to the vision represented by the Constitution. The Constitution rests on the belief that citizens should both exercise self-determination and be free from unwarranted government interference in their personal lives. Central to the framers' vision was their experience of living under a government that denied individual freedoms concerning religious practice, expression, and conscience, and permitted excessive accruals of power, which the framers viewed as a form of tyranny. However difficult it may be to respect freedom when its results seem obnoxious, the framers concluded that the hardships of permitting freedom are fewer and less dangerous than the hardships of denying it, and that the dispersion of power prevents the excesses of tyranny. The Constitution's basic sense is that life is better if the state does not dictate attitudes or actions and plays a minimal role in defining individual values. [2] Preserving Life This constitutional vision of balance exposes major difficulties in the Missouri Cruzan opinion. In asserting an unchecked state interest in preserving life, even in cases that do not violate any criminal prohibition against murder or suicide, the Missouri Supreme Court undertakes to obstruct an act the state could not prosecute. Because Nancy Cruzan "may" live for thirty years and is not imminently dying for as long as she is artificially fed, she is not terminally ill under Missouri's statute. The court concludes that its interest in preserving life outweighs any identifiable interest in permitting her to die. Indeed, Missouri's "unqualified" interest in preserving life precludes any interest in the quality of life. Moreover, the court announces that only "clear and convincing" evidence will satisfy the obligation to respect self-determination, and then discounts entirely evidence the trial court found credible. To protect the infirm and the disabled, the court rejects as unreliable substituted judgement or best interests standards for decisionmaking. The crucial question of precisely what evidence would be "clear and convincing" is left unanswered, but the language used by the court, the trends indicated by the O'Connor case in New York, and legislation enacted in furtherance of the so-called "right-to-life" agenda, suggests that such an evidentiary standard will prove chimerical. …

What about the family

Abstract: The prevalent ethic of patient autonomy ignores family interests in medical treatment decisions. Acknowledging these interests as legitimate forces basic changes in ethical theory and the moral practice of medicine.

The place of autonomy in bioethics.

Abstract: The Place of Autonomy in Bioethics I come not to bury autonomy, but to praise it. Yet my praise is somewhat muted; for autonomy merits only two cheers, not three. Five years ago at the fifteenth anniversary of the founding of The Hastings Center the general theme was "Autonomy - Paternalism - Community." Hearing several sharp criticisms - indeed, virtual rejections of autonomy - I stressed in my oral remarks and later in my published paper that we "need several independent moral principles, such as individual and communal beneficence and respect for personal autonomy." It is "unfortunate and even pernicious," I continued, to suggest that "biomedical ethics is allegedly moving beyond autonomy to community and paternalism," for such an approach would reduce "ethical reflection to a mere mirror of societal concerns at a particular time, when in fact the task for serious ethical reflection is to indicate the importance and relative weight of several moral considerations that should be maintained in some tension or balance."[1] Reaffirming that statement five years later, I want to defend the principle of respect for personal autonomy as one among several important moral principles in biomedical ethics. My defense will proceed by sketching and clarifying some presuppositions and implications of this principle in light of several major criticisms. Many of those criticisms are misplaced, because they are (perhaps deliberately) not directed at the most defensible conceptions of the principle of respect for autonomy. I will contend that an adequate conception of the principle of respect for autonomy can meet the main criticisms levelled by various critics, whether communitarians, narrativists, virtue theorists, traditionalists, or religionists. My main argument focuses on the principle of respect for autonomy as an important moral limit and as limited. As a moral limit, it constrains actions; but it is also limited in scope and in weight, in addition to being complex in its application. Both critics and defenders tend to neglect these senses of limit in their focus on an oversimplified, overextended, overweighted principle of respect for autonomy. Misdirected Criticisms In several ways, the principle of respect for autonomy has been misunderstood and misinterpreted, in part as a result of flawed formulations and defenses by its supporters. Critics have often supposed that they were attacking the concept of autonomy when in fact they were aiming their fire at particular conceptions of autonomy, often the least defensible ones. It has been a mistake to use the term "autonomy" or even the phrase "principle of autonomy" as a shorthand expression for "the principle of respect for autonomy."[2] It is important to correct this mistake because many critics seem to suppose that proponents of this principle have an ideal of personal autonomy and believe that we ought to be autonomous persons and make autonomous choices. However, the ideal of personal autonomy is neither a presupposition nor an implication of the principle of respect for personal autonomy, which obligates us to respect the autonomous choices and actions of others. The ideal of autonomy must be distinguished from the conditions for autonomous choice. It is important for the moral life that people be competent, be informed, and act voluntarily. But they may choose, for example, to yield their first-order decisions (that is, their decisions about the rightness and wrongness of particular modes of conduct). For example, they may yield to their physicians when medical treatment is proposed or to their religious institution in matters of sexual ethics. Abdication of first-order autonomy appears to involve heteronomy, that is, rule by others. However, if a person autonomously chooses to yield first-order decisionmaking to a professional or to a religious institution, that person has exercised what may be called second-order autonomy. …

Reassessing Autonomy in Long‐Term Care

Abstract: The realities of long-term care call for a refurbished, concrete concept of autonomy that systematically attends to the history and development of persons and takes account of the experiences of daily living.

The ethics of home care: autonomy and accommodation.

Abstract: Preface In the last decade, home care has been of the fastest growing sectors in our health care system. For the frail elderly in particular, home care agencies are now a major source of medical, nursing, and social services. As medicare's prospective payment system prompts earlier hospital discharge of the elderly and nursing home care continues to be scarce, costly, and scantly covered by public or private insurance, more and more of the elderly receive care in the community. "Home" care may sound domestic and low key but it is quietly bearing massive burdern in the health care system, burdern that will only increase as our population ages, dramatically, in coming decades. Clearly, bioethics ought not to bypass home care in a consuming concern with the problems of acute care. The following report offers an initial exploration of home care and its distinctive ethical problem, particularly in the area of autonomy and allocation, and specifically with regard to the frail elderly. Home care serves a much wider group Of clients than the frail elderly, but these other clients and the ethical issues distinctive to their care were beyond the scope of our research. obviously, the sheer diversity of home care services and clients calls for more extended analysis from bioethics. The principal source of the report was a collaborative research Project Of The Hastings Center and the Division of legal and Ethical Issues in Health Care at Montefiore Medical Center. This Project was part of a four-year grant program in which the Retirement Research Foundation supported twenty--eight research projects on the autonomy of the elderly in long mm care. For readers interested in the topic, a special supplementary issue of The Gerontologist [June 1988] contains reports on a number of these research projects.) Additional ma al for this report comes from a Hastings Center Project funded by the Ittleson Foundation. This earlier project involved a comparative study of home care for the elderly and community-based care of the mentally ill It provided an initial exploration of many of the ethical issues crucial to this report. We want to thank both the Retirement Research Foundation and the Ittleson Foundation for their support of this research. In addition we thank the members of the two project study groups. Together, they number over sixty-five specialists in ethics and the various professions serving home care. Though too numerous to mention individually, their contributions to this report were indispensable. The dramatic growth of our elderly population, coupled with cost-containment policies in hospital care and limited options in nursing home care, means that massive numbers of frail elderly now receive care at home. At present, more than 20 percent of the elderly population is functionally disabled and needs basic assistance in daily living; of those receiving such assistance, more than 70 percent continue to live in the community (Doty 1986; Liu et al. 1985; Special Committee on Aging 1987). Functional disability, and a consequent need for long-term care, is particularly high among the "old-old" (those aged 85 and over), the fastest growing segment of the U.S. population and the group that, by 2040, is likely to produce half of the aggregate demand for long-term care among the elderly (Suzman and Riley 1985; Soldo and Manton 1985). Thus, the present elderly population receiving home care is only a portent of what lies ahead as our society continues to age, as life expectancy lengthens, as medical technology becomes more expert at sustaining frail lives and doing so outside institutional settings (Barhydt-Wezenaar 1986; Health Care Financing administration 1987). A pattern is emerging in long-term care of the elderly that will dominate health care well into the next century. Medicare's prospective payment system now encourages hospitals to implement early-as-possible discharge of elderly patients. …

Practicing ethics: where's the action?

Abstract: Practicing Ethics: Where's the Action? When I first joined The Hastings Center twenty years ago, I was a young biochemist working at the National Institutes of Health, researching problems that had solutions, albeit about bacterial physiology. Thanks in part to my involvement with Hastings, I am today a humanist pursuing questions without final answers about human nature and human good, and I can boast only of having at last become old enough to be entitled to my somewhat traditional beliefs and concerns. "Nestor of bioethics," remarked one of my faculty friends when I told him of this speech for this occasion. Because I want to speak mainly about the present and the future, I will not Nestor you with tales of the good old days. But it would be useful to remind ourselves of a few salient facts. First, the late 1960s were a turbulent time for American society, but a sleepy time for the study of ethics. Academic philosophy busied itself with other things, and no one had ever heard of "ethicists." Second, the effects of the so-called biological revolution were only just beginning to be felt: oral contraceptives and psychedelic drugs were in use and the first heart transplant had just been performed, but legal abortion, fetal tissue implantation, prenatal genetic diagnosis, human in vitro fertilization and embryo transfer, surrogate motherhood, gene synthesis and gene splicing, hospices, and orders not to resuscitate were things of the future, though some of them were already foreseeable. Third, those of us who gathered to found The Hastings Center, though we came from a variety of cultural and professional backgrounds, shared a concern for the human meaning of these and other anticipated new biomedical developments. Some of us inclined toward hope, eager to have the benefits of new technologies, but with protections against error and folly. Others of us inclined toward fear, repelled by certain prospects of biomedical intervention and concerned that even the well-intentioned uses of the new powers over the human body and mind might inadvertently diminish our humanity. But though we were variously moved, moved all of us were by moral (or religious) sentiments and concerns. If I remember correctly, only one of the founding Fellows made his living teaching philosophy, and he would come to meetings only if they did not require that he violate the Sabbath. It goes without saying, but it is important to note, that none of us came into bioethics through either the study or the practice of bioethics as it is now practiced and studied. That was then. This is now. Today the ethics business is booming. There is ethics action everywhere. Most medical schools offer courses in medical ethics; in colleges and universities undergraduate ethics courses abound; and some philosophy departments offer PhD.s in bioethics. Many hospitals have established ethics committees, mainly but not exclusively for dealing with decisions regarding termination of treatment, while institutional review boards must rule on all sorts of experimentation with human subjects. Courts of law are increasingly asked to settle ethical conflicts, while blue ribbon commissions, national and local, analyze issues and issue guidelines to govern practice. Many other research institutes have followed The Hastings Center into the field, and the literature - professional and popular - grows, it seems, exponentially. And ethicists are in vogue: they get positions in medical schools, are quoted in the daily papers on every hot topic, and appear frequently on television and talk shows. The Hastings Center has been and remains a major force in these developments. Since its beginning it has led the action on all these fronts, shifting its energies as the times have changed, but being never far from the middle of things. For those who practice ethics - especially biomedical ethics - Hastings, more than anywhere, is where the action is. In looking toward the future of The Hastings Center, we do well to examine the present. …

Religion and the Secularization of Bioethics

Abstract: The occasion of this special supplement on religion and bioethics serves to remind me, once again, that the field of bioethics as we now know it is a creature of its time and history. It grew up during the 1960s and 1970s in an era of affluence and social utopianism, in a culture that was experimenting with an expansive array of newly found rights and unprecedented opportunities for personal freedom, and in the context of a national history that has long struggled to find the right place for religion in its public life. For medicine it was a time that combined magnificent theoretical and clinical achievements with uncommonly difficult moral problems, many of them bearing on the self-identity and goals of medicine. The story of contemporary bioethics turns on the way in which those problems intersected with, and whose understanding was shaped by, that larger temporal and social context. The most striking change over the past two decades or so has been the secularization of bioethics. The field has moved from one dominated by religious and medical traditions to one now increasingly shaped by philosophical and legal concepts. The consequence has been a mode of public discourse that emphasizes secular themes: universal rights, individual self-direction, procedural justice, and a systematic denial of either a common good or a transcendent individual good. Let me, if I may, use myself as an illustration of this trend, as well as an example of some considerable uneasiness left in its wake. When I first became interested in bioethics in the mid-1960s, the only resources were theological or those drawn from within the traditions of medicine, themselves heavily shaped by religion. one way, that situation was congenial enough. I was through much of the 1960s a religious person and had no trouble bringing that perspective to bear on the newly emergent issues of bioethics. But that was not to be finally adequate for me. Two personal items were crucial. My religious belief was by then beginning to decline, and by the end of the decade had all but disappeared. My academic training, moreover, was that of analytic philosophy, and I wanted to bring that work to bear on bioethics. Was it not obvious, I thought, that moral philosophy, with its historical dedication to finding a rational foundation for ethics, was well suited to biomedical ethics, particularly in a pluralistic society? Just as I had found I did not need religion for my personal life, why should biomedicine need it for its collective moral life? The answer to that last question has been less obvious than I originally thought. If my life has been, in a way, relieved by the absence of religion as a guiding force, I cannot say that it has been enriched or that I am a better person for that, Nor can it be said, I think, that biomedical ethics is demonstrably more robust and satisfying as a result of its abandonment of religion. To say that of course is not to make a case for the validity of religion, which must be made on its own merits, not on its potential contribution to bioethics. Some nineteenth century thinkers, we might recall, came to think that, although religion was false as a way of understanding the world, it was socially useful to sustain as a source of discipline and political stability. There was always something slightly cynical in that view, and doubly so because it was meant to strengthen the hand of those in authority. Nonetheless, it is not necessary to entertain such a position to recognize that, whatever the ultimate truth status of religious perspectives, they have provided a way of looking at the world and understanding one's own life that has a fecundity and uniqueness not matched by philosophy, law, or political theory. Those of us who have lost our religious faith may be glad that we have discovered what we take to be the reality of things, but we can still recognize that we have also lost something of great value as well: the faith, vision, insights, and experience of whole peoples and traditions who, no less than we unbelievers, struggled to make sense of things. …

Animals, science, and ethics -- Section III. Critical anthropomorphism, animal suffering, and the ecological context.

Abstract: Section III discusses the problem of animal suffering and its recognition by "critical anthropomorphism," a serious and thoughtful attempt to bridge the gap between the understanding of human and animal life. This is a method that involves critically using our human experience to recognize and alleviate animal suffering by checking our immediate intuitions about an animal's subjective life against what we can learn from more objective scientific studies. Yet the necessarily imperfect or imprecise nature of any method to get "inside" the animal and to grasp what it subjectively feels accounts for the ongoing difficulties and controversies over the definition of animal suffering. Just how far should we adhere to an objective, "outside" or subjective, "inside" approach?....

Reproductive gifts and gift giving: the altruistic woman.

Abstract: Reproductive Gifts and Gift Giving: The Altruistic Woman In the aftermath of the "Baby M" case, the surrogacy debate has mostly left the media forum and entered the state legislatures. Many of these legislatures are now debating the legal status of surrogate contracts. Where legislative committees have opposed commercial contracts, they have tended to view alternative noncommercial surrogate parenting arrangements as ethically and legally permissible. An underlying theme here is that noncommercial arrangements are seen as altruistic This article examines the implications of an altruistic ethic, particularly in reference to surrogacy, and highlights its problems for women in the reproductive realm. Gifts and Gift Giving In his well-known study, The Gift Relationship: From Human Blood to Social policy, Richard Titmuss opposed commercial systems of blood supply to noncommercial and altruistic systems of blood giving. Titmuss's concern was to shore up the spirit of altruism and voluntarism which he saw declining in western societies. His analysis is, in the main, a positive assessment of the possibilities of altruistic blood donation. But Titmuss also understood that giving was influenced by "the relationship set up, social and economic, between the system and the donor," and that these relationships are "strongly determined by the values and cultural orientations permeating the donor system and the society in general." [1] The dialetic between values and structural factors emerges strongly in his work. We must ask, he wrote, if there is truly "no contract of custom, no legal bond, no functional determinism, no situations of discriminatory power, domination, constraint or compulsion, no sense of shame or guilt, no gratitude imperative and no need for the penitence of a Chrysostom" (239). The role of cultural values and constraints in shaping gift-giving arrangements is vital. In the case of many new reproductive practices, and surrogacy especially, "the donor system" mainly depends on women as the gift givers--women who donate the use of their bodies and the fruit of their wombs. Those who endorse altruistic surrogacy as an alternative to commercial surrogacy accept, without comment or criticism, that it is primarily women who constitute the altruistic population called upon to contribute gestating capacities. [2] The questions that Titmuss raised about "contract of custom," "functional determinism," "situations of discriminatory power," "domination, constraint or compulsion," as well as possible "shame or guilt" and a "gratitude imperative" form part of the unexamined hallowing of altruistic surrogacy. This unexamined acceptance of women as reproductive gift givers is very much related to a longstanding patriarchal tradition of giving women away in other cultural contexts--for sex and in marriage, for example. Following Titmuss, we must continually in these discussions of altruism ask: who gives and why? But further, who has been given away historically and why" In this sense, women are not only the gift givers but the gift as well. The pervasiveness of women's personal and social obligation to give shapes the contexts of reproductive gifts and gift giving. We see this most clearly in the situation of so-called altruistic surrogacy. Altruism versus Commercialism Those critical of commercial surrogacy often contrast it to noncommercial or altruistic surrogacy. The New Jersey Supreme Court, in its appellate judgement, In the Matter of Baby M, found surrogate contracts contrary to the law and public policy of the state. Nonetheless, it concluded that there were no legal impediments to arrangements "when the surrogate mother volunteers, without any payment, to act as a surrogate." [3] Many state legislative committees are taking action to prohibit commercial surrogacy but are leaving untouched the whole area of noncommercial surrogate practices. …

Genetics and human malleability.

Abstract: Genetics and Human Malleability Just how much can, and should we change human nature ... by genetic engineering? Our response to that hinges on the answers to three further questions: (1) What can we do now? Or more precisely, what are we doing now in the area of human genetic engineering? (2) What will we be able to do? In other words, what technical advances are we likely to achieve over the next five to ten years? (3) What should we do? I will argue that a line can be drawn and should be drawn to use gene transfer only for the treatment of serious disease, and not for any other purpose. Gene transfer should never be undertaken in an attempt to enhance or "improve" human beings. What Can We Do? In 1980 John Fletcher and I published a paper in the New England Journal of Medicine in which we delineated what would be necessary before it would be ethical to carry out human gene therapy. [1] As with any other new therapeutic procedure, the fundamental principle is that it should be determined in advance that the probable benefits outweigh the probable risks. We analyzed the risk/benefit determination for somatic cell gene therapy and proposed three questions that need to have been answered from prior animal experimentation: Can the new gene be inserted stably into the correct target cells? Will the new gene be expressed (that is, function) in the cells at an appropriate level? Will the new gene harm the cell or the animal? These criteria are very similar to those required before use of any new therapeutic procedure, surgical operation, or drug. They simply require that the new treatment should get to the area of disease, correct it, and do more good than harm. A great deal of scientific progress has occurred in the nine years since that paper was published. The technology does now exist for inserting genes into some types of target cells. [2] The procedure being used is called "retroviral-mediated gene transfer." In brief, a disabled murine retrovirus serves as a delivery vehicle for transporting a gene into a population of cells that have been removed from a patient. The gene-engineered cells are then returned to the patient. The first clinical application of this procedure was approved by the National Institutes of Health and the Food and Drug Administration on January 19, 1989. [3] Our protocol received the most thorough prior review of any clinical protocol in history: It was approved only after being reviewed fifteen times by seven different regulatory bodies. In the end it received unanimous approval from every one of those committees. But the simple fact that the NIH and FDA, as well as the public, felt that the protocol needed such extensive review demonstrates that the concept of gene therapy raises serious concerns. We can answer our initial question, "What can we do now in the area of human genetic engineering?," by examining this approved clinical protocol. Gene transfer is used to mark cancer-fighting cells in the body as a way of better understanding a new form of cancer therapy. The cancer-fighting cells are called TIL (tumor-infiltrating-lymphocytes), and are isolated from a patient's own tumor, grown up to a large number, and then given back to the patient along with one of the body's immune growth factors, a molecule called interleukin 2 (IL-2). The procedure, developed by Steven Rosenberg of the NIH, is known to help about half the patients treated. [4] The difficulty is that there is at present no way to study the TIL once they are returned to the patient to determine why they work when they do work (that is, kill cancer cells), and why they do not work when they do not work. The goal of the gene transfer protocol was to put a label on the infused TIL, that is, to mark these cells so that they could be studied in blood and tumor specimens from the patient over time. The TIL were marked with a vector (called N2) containing a bacterial gene that could be easily identified through recombinant DNA techniques. …

Religion and Moral Meaning in Bioethics

Abstract: Few experiences in life seem more pointless, more suggestive that our lives are subject to powers that are arbitrary, abusive, and destructive, than the suffering and death of children What possible account could be given to explain, let alone give meaning to such an event? Several years ago, I developed a friendship with a young couple who were anxiously awaiting the birth of their first child What transpired, quite unexpectedly, was every prospective parent's nightmare: their child was born with serious congenital abnormalities, evidenced visibly by facial disfigurement and substantial respiratory difficulties Following a short stay in an NICU, the neonatologists indicated that though they could not be sure when death would occur, they were certain that the child's prognosis was terminal, and asked the parents for their preferences regarding continuing or stopping treatment How might we think about such a problem in contemporary bioethics? We might invoke a benefits versus burdens calculation or a best interests standard, or take procedural recourse to an ethics committee, perhaps recommending withdrawal of life support Or, we might consider the cogency of arguments supporting active killing as a compassionate act to spare the child what would inevitably be a painful life, whatever its duration But the parents did not ask those kinds of questions; they instead brought to that very difficult situation an understanding that our lives are subject to ultimate powers which are creative, nurturing, and redeeming, and a way of construing the world shaped decisively by a set of religious convictions about the purpose of life, the meaning of death, and ultimate human destiny Within that moral vision, Angela was not seen by her parents as a tragedy to be prevented (by prenatal diagnosis and abortion) or an unwanted burden whose life could easily be shortened, but instead as a gift in need of care With minimal medical support, my friends took Angela home to begin their family life bound together, and over the next few months gave devoted and unceasing care until she died I do not relate this story to say the parents' choice to care for their daughter at home rather than let her die in the hospital was ethically right or justifiable I am still unsure about that choice, even though the subsequent care Angela received was to me an exemplary witness of how we should collectively treat the vulnerable and voiceless in our midst Rather, my point is that a world view provided meaning in a situation that seemed pervaded by arbitrariness and cruelty, a meaning that could not be supplied or sustained by our conventional bioethics maxims about "best interests" or "substituted judgment" The tragedy seen by others, including myself, was transformed into a gift "Suffer the little children for of such is the kingdom of God" Religion offers an interpretation or revelation of reality that responds to what Max Weber referred to as the "metaphysical needs of the human mind" to seek order, coherence, and meaning in our lives, to understand ultimate questions about our nature, purpose, and destiny Yet, in our common endeavor to do bioethics within the limits of reason alone, the discourse necessary to sustain the traditions of moral insight and meaning embedded in the practices and values of religious communities may be characterized as "private" and so considered largely irrelevant to the overriding objectives of bioethics Indeed, prominent scholars have given serious consideration to whether traditions of theological ethics may constructively contribute to bioethics and to the practices of health care, and the conclusion on several accounts may often be that such a moral resource is dispensable: "Bioethics, where it succeeds, shows where it does not need theology"[1] The tensions between religious discourse and bioethics pose dual challenges of accessibility and meaning Insofar as the incorporation of moral claims from a specific religious tradition or community is deemed to undermine the possibilities for a generally accessible bioethics discourse, the significance of religious perspectives may be very limited …

Biomedicine and technocratic power.

Abstract: Current developments in biomedicine promise a genetically engineered and better future.(1) A "genetic future" would mean incorporating more high technology medicine into the habits of everyday life. The order of the body, that is, the sense of how we should look, act, and perform, would become the domain of conventional medicine, and we would look to medicine to intervene in human performance, ability, and even character when we thought these were less than they should be. Our willingness to accept medicine in this capacity would require the deeper conviction that technological developments and scientific discoveries are proper measures of human progress.(2) Such attitudes are not remote from contemporary values. We live in an era in which many personal and social problems are treated as if they were matters capable of technical solution-the interventionist response to infertility through in vitro fertilization is an example. Such a belief system conceals from us the probability that advanced technology will not successfully solve the complex social problems we think it should. Moreover it grants to advanced technology, and those who own and control it, a high social value. Indeed, so highly valued is technical knowledge that it can supersede moral considerations and argument in providing a base upon which therapeutic and research decisions are taken. For example, the widespread use of amniocentesis and chorionic villus sampling, which foretell the sex, health, parentage, and future diseases of the fetus, has the immediate appeal of decreasing the numbers of damaged and defective newborns by indicating the "need" to terminate a pregnancy but, simultaneously, the same technology has the latent function of determining which human lives are more valuable, or in utilitarian terms, which individuals are potential welfare burdens to the community in the long term. Measuring the future capacities of a fetus is a form of human accounting that estimates the individual's future costs or contribution to the society. As early diagnostic and screening procedures become technically commonplace, a classification of human traits deemed suitable for remediation is simultaneously coming into effect. In the future, as more of our genetic abilities and characteristics are foretold by technically sophisticated probes, we would look to medicine to intervene to ensure that our physical appearance and capacities are in accord with current standards of normalcy.(3) In these circumstances, the practices of biomedicine have the latent function of social engineering. Michel Foucault has argued that this is characteristic of medicine in the West, whose development is coterminus with an account of how social power is accumulated by an elite profession through its increasingly esoteric technical base.(4) The rapid increase in the medicalization of various human conditions has served to promulgate the view that medicine can perfect human life. Many of the current well publicized developments in medicine such as genetic testing, transgenic engineering, organ transplants, and so on, promise a perfected human in a future bio-utopia where debilitating diseases and degeneration have been effectively eliminated.(5) In such a future, our dependence on medicine to specify and regulate how we should live and behave has the effect of indenturing us to the professional ambitions of medicine. The point must be emphasized that medicine has not been greatly successful in raising the standards of health across the community. On the contrary, history has shown a different view.(6) However, the image and status of medicine are such that its promises to rid us of this disability and that discomfort have seemed immediately plausible. Thus, the elite position of the profession is assured and many opportunites for further expansion are gleaned from its promissory image of a bio-utopian future. Viewing medicine through a Foucauldian perspective is to be less concerned with social consequences that may result from specific biomedical achievements and more aware of the pan that the medical technocrat plays in directing social and government policy in matters that affect the individual's general life chances. …

Critical Anthropomorphism, Animal Suffering, and the Ecological Context

Abstract: Judgments about animal suffering are of central importance in evaluating scientific protocols. To make such judgments we must confront a set of problematic practical questions: How are we to predict the effects on animals of particular scientific protocols? How are we to recognize and evaluate animal suffering when it does occur? How are we to alleviate that suffering? How do we address larger issues of harm that go beyond the individual animal? Here, we examine ways of answering such questions, concentrating upon critical anthropomorphism. Critical Anthropomorphism Anthropomorphism is the attribution of human characteristics (including the projection of subjective states and feelings) to non-human entities. Such characteristics are usually applied to animals, but may also be applied to inanimate objects-such as when we talk about a "vicious" storm, an "angry" wind, an "aggressive" weed, an "insult" to the flag, and so on. Although these terms are obviously metaphors when applied to the inanimate, their use with animals can lead to uncritical thinking and invalid interpretations. (5,6,20) In its most extreme form, uncritical anthropomorphism can mean animals being "personified," or treated as if they actually were humans. In less extreme form, uncritical anthropomorphism may lead to misinterpreting an animal's behavior and hence to misunderstanding that animal's needs and emotional state (e.g., cattle kept outdoors in extreme cold may in fact be adapted to such conditions so that bringing them indoors can cause the animals heat-stroke; chimpanzees "grin" when aggressive or fearful and not, as uncritical anthropomorphism would claim, when amused or welcoming). Criticisms of animal research often rely on an intuitive and uncritical anthropomorphism and a misplaced empathy that reflects more on human sensibilities than a real understanding of the state the animal may be experiencing. (7) In spite of these pitfalls, our intuitions about what is best for an animal, based on a knowledge of ourselves and other people, may often be more on than off the mark. (23) Indeed, if the similarities between animals and humans are deemed sufficient to extrapolate from animals to humans in medical, toxicity, neuroscience, behavior, and cognition research, by implication the possibility exists of extrapolating from humans to animals. Yet even in the human sphere, empathy based on self-knowledge alone cannot be the basis for scientific understanding. Similarly, our knowledge of people, no matter how sophisticated, will be insufficient for die task of understanding animals. Thus we need a critical anthropomorphism (CA), in which empathy is tempered by objective knowledge of the particular species' (or individual animal's) life history, behavior, and physiology. While CA does not ignore empathy and the assault on our sensibilities of animal treatment, it requires a willingness to incorporate objective knowledge of the animal's natural history, nervous system, domestication, and prior experience, as well as an appreciation for the scientific literature on the treatment- It also incorporates the ethological view that animals are adapted to a range of environments by evolution and that removal of aspects of this natural environment (spatial, social, climatic, dietary, structural) should be done with care, preferably systematically. In practice, many laboratory animals have been kept in unnatural environments for generations and only now are attempts emerging to "put back" aspects that seem important. Thus we face the urgent task, mandated by law in many cases, but ethologically mandated in all, to evaluate existing practices. Animal Suffering "Suffering" and its alleviation are usually the focus of critiques of the human use of animals. We will use "suffering" here to encompass the full range of adverse effects that might be inflicted on individual animals in research settings, which can be divided into three overlapping categories: 1) the spectrum of aversive sensations generally caused by physical assaults on the body (chronic or acute discomfort through to pain); 2) the continuum of stress to distress, which can be beneficial at one end but cause severe abnormal physiological changes at the other (e. …

Noncompliance in AIDS Research

Abstract: Noncompliance in AIDS Research From Nuremberg to the mid-1980s, the ethics of research has concentrated exclusively on the rights of patient-subjects. Noncompliance with protocols--either lying to get in a study or, once in, failing to adhere to its requirements--has always been a nuisance, but never a major problem requiring public discussion. In the past, noncompliance could largely be chalked up to the frailty inherent in human nature. Subjects usually broke the rules because of carelessness, despair of getting better, or adverse reactions. The advent of AIDS and AIDS research has transformed a pervasive but minor problem into a major ethical-political issue. Although reliable statistics on noncompliance are unavailable, for obvious reasons, anecdotal reports of rampant "lying and cheating" are numerous. [1] Participants lie to get into studies (often with the help of their own physicians) [2] and, once enrolled, lie about their medical condition and level of compliance. They attempt to frustrate the use of placebos by dropping out of studies if randomized to the placebo arm; by analyzing the drugs they receive, thereby unblinding the study; and by pooling drugs, which ensures that they will receive some portion of the active substance while playing havoc with assigned dosage levels. This latter problem is often exacerbated by subjects who, fearful of receiving excessively high amounts of experimental drugs, substitute their own notions of appropriate dosages for the terms of the protocol. Finally, participants frequently take other nonvalidated therapies in addition to the drugs under study, thereby possibly masking the beneficial or harmful effects of those drugs. [3] Clearly, the magnitude of noncompliance in AIDS research threatens the validity of many important ongoing clinical trials. Why has noncompliance become such a serious problem in the age of AIDS? Three complementary explanations come to mind. First, the desperate quest for access to health care has largely eclipsed altruism as a motive for participating in clinical trials. In spite of the fact that the drugs under study are experimental, persons with AIDS (PWAs) and HIV-infected persons have come to view them either as the exclusive source of therapeutic benefit or else (as in studies using placebos) as their only chance of such benefit. Some potential subjects are primarily interested in access to experimental drugs, many of which have been unavailable off protocol. Others may be able to purchase a drug through the market or so-called "guerrilla clinics," but desire entry into trials to acquire the needed drug free of charge. Still others, mostly the poor and uninsured, may be relatively disinterested in obtaining experimental drugs, but keenly desirous of obtaining the modicum of primary care that often comes with participation in hospital-based clinical trials. For all such patient-subjects, advancing their own self-interest--rather than the future of medical science or the plight of future sufferers of AIDS--seems to be the driving motivational force. Secondly, many infected persons and PWAs are desperate to obtain help. Rightly cognizant of AIDS as a lethal threat to their very existence and of the impotence of current medical science, many infected persons will "do anything," including lying and cheating, to obtain what they think they need to live. Access to clinical trials is the "only hope" for such patients, for whom noncompliance is not so much an ethical problem as a means of personal survival. Thirdly, many potential subjects are profoundly alienated from "mainstream" society. Unlike most cancer patients, who are often equally desperate for "last chance" cures, the ranks of AIDS patients are largely filled with persons who, prior to their illness, had been entirely marginalized. While some gay men and drug users might still identify very strongly with the majority culture, many no doubt are openly hostile to the larger society that has criminalized and stigmatized their way of life. …

What price parenthood

Abstract: Current reproductive technology challenges us to think seriously about social values surrounding childbearing. Thoughtful discussion must combine careful attention to the experience of pursuing parenthood by technological means with principled reflection on the morality of this pursuit.

The argument for unlimited procreative liberty: a feminist critique.

Abstract: The arguments for an unlimited right to procreate in John Robertsons "Procreative Liberty and the Control of Conception Pregnancy and Childbirth" in "Virginia Law Review" 69 (April 1983); and "Embryos Families and Procreative Liberty: The Legal Structure of the New Reproduction" in "Southern California Law Review" 59 (1986) are looked at from a feminist perspective. The position is mainly based on the importance of procreation for individuals. Emphasis is on the underlying model of procreative liberty and its consequences for understanding reproduction and attitudes to human being in general and children in particular. The courts have taken the position of noninterference in procreative decisions particularly involving married couples. Robertson says that use of technology is acceptable to fulfill a couples "reproductive goals." It is also all right Robertson feels to manipulate the sex of the offspring. The author feels that children are being treated as property when this is done. A contract between parties will decide who the members of the childs family are. Contracts are inadequate the author feels and perpetuate a "dangerous" family model. The contractual view of procreative freedom perpetuates and assumes a traditional patriarchal family model. The model has been "dangerous" for women. One of the defects of the unlimited procreative liberty argument is a tendency to divide means from ends. Robertsons concern with the promotion of the procreative initiators interests is not adequately balanced by a concern for people who will take part as the means to the reproductive goals. We need to pay careful attention to what is being said of personhood reproductive capacities and parent-child relations in arguments for unlimited reproductive freedom. We should be aware of the potential for harm of the new reproductive technologies.

Health care in common: setting priorities in Oregon.

Abstract: Health Care in Common: Setting Priorities in Oregon The Problem. The 1989 Oregon Legislature passed a package of statutes that will substantially alter the health care system in Oregon, and may provide a model for similar reforms in other states. These laws expand access to health care by broadening Medicaid eligibility, by creating incentives for businesses to provide health insurance, and by creating an insurance pool to cover persons now "uninsurable" because of preexisting health conditions. The laws also create a process whereby health care priorities will be established so that Medicaid and state-encouraged private coverage can provide the most cost-effective and beneficial forms of care for the greatest number of people. Whether these changes will be implemented remains to be seen; in part, this depends on the federal government's willingness to permit Oregon to design Medicaid benefits on the basis of explicitly prioritized health services. Whatever the outcome, Oregon has taken a bold step in grappling with a national problem. Oregon Health Decisions (OHD), the grassroots community health decisions group in the state, has played a key role in the search for answers to our health care access and priority-setting dilemmas. The innovation is not without risk. Some opponents argue that the proposed changes are unfair, that they place too much burden on the poor. Radical critics object that this process merely tinkers with a fundamentally defective system that requires complete restructuring. Technical critics argue that health care services are too complex to be prioritized with scientific validity. Still, the Oregon experiment is going forward, warily trusting the intuition that the goals of access and cost control can and must be served simultaneously. The process of setting priorities has been undertaken by a newly created Health Services Commission (HSC), which is required by law to "actively solicit public involvement in a community meeting process to build a consensus on the values to be used to guide health resource allocation decisions." The HSC also held public hearings, conducted a telephone survey, and consulted with medical and technical experts as it worked to devise a priority list of medical services to submit to the state legislature. OHD's special role in this process related to the community meetings, which will be the focus of our article. Guided by a twenty-nine-member Project Advisory Committee, and aided by sixty volunteers, OHD conducted forty-seven meetings throughout the state involving over a thousand citizens from mid-January to mid-March 1990. Seventy percent of the participants were college educated, a third had household incomes of at least $50,000, slightly more than half were between the ages of twenty-one and fifty, and ninety-three percent were Caucasians. The purpose of the meetings was to develop information on why members of the community judge certain health services particularly important for the community. They sought to discover whether Oregonians do in fact share a living tradition of values about health care that can help define some package of health services as constituting a common good. At the meetings a brief slide show described the problem of simultaneously expanding access and setting limits. Demographic information was collected and then participants, in small groups of about ten, focused their attention on health service priorities. Group discussion took up the bulk of the meeting as each small group compared individual rankings, explored the values that guided their priorities, and actively examined whether they had consensus about important values. The groups then reassembled in a plenary session. This permitted further examination and clarification of the question of value consensus. Values. Several basic themes emerged as participants articulated their value judgments. At every meeting, the goal of prevention was vigorously advanced. …

Can Theology Have a Role in “Public” Bioethical Discourse?

Abstract: In the US religious groups have been active in voicing their bioethical concerns in the public discourse. The Roman Catholic Church and religiously motivated anti-abortion activists have been quite visible in the public discussion of issues ranging from abortion infertility therapies withdrawal of artificial nutrition and direct euthanasia. While some might object to such particularistic groups having a voice in our pluralistic society their legitimacy comes not from their religious origins but from their moral convictions. The bioethical literature is full of opinions written from particular religious points of views but rarely are these opinions grounded in appeals to particular religious beliefs. Rather they are grounded in particular moral convictions that may have originated from religious beliefs. Nonreligious moral convictions have their origins outside of religion but in the literature it is often impossible to tell them apart. Directly religious appeals are rarely used in the literature since their scope would be limited only to those who shared a common religious belief. Instead the opinions are grounded in substantive moral principles. It must be understood that theological contributions to bioethics overlap and coincide with philosophical ones more than they conflict. Based on a commitment of openness and dialogue bioethics provides a forum for people with many different inspirations for their moral convictions to discuss the relevant issues. Theology must play a role in bioethics if only to clarify the issues for the religious community itself. And since the inspiration and motivation for peoples moral convictions can be either religious or not theology need not be excluded from the public dialogue.

Outrageous fortune: selling other people's cells.

Abstract: Outrageous Fortune: Selling Other People's Cells All men are mortal. John Moore is a man. Therefore John Moore is mortal. This is uncontroversial. However, a cell line developed from John Moore's body, the "Mo" cell line, is described as immortal, and the lawsuit regarding John Moore's right to share in the profits produced by the cell line, although not immortal, may seem to be. A lower court previously rejected any claim Moore might have in a cell line developed from his diseased spleen, and an appeals court reversed this decision, holding that physicians and researchers could be held liable for conversion for using a patient's cells without permission. [1] The Supreme Court of California has now partially reversed the appeals court ruling, and the litigation is likely to live on. The Case of John Moore In 1976 John Moore's physician, David W. Golde, recommended that Moore's spleen be removed as a treatment for hairy-cell leukemia. After surgeons removed the spleen, Golde and others took cells from it and cultured them into an "immortal" cell line that produced a variety of useful products. In 1984 this cell line was patented, and Golde and others will reap substantial profits from it. Moore alleges that he was never informed of any of this and never agreed to it. Assuming this is true, the questions presented are: (1) can Moore sue Golde for failure to disclose his pecuniary interest in producing a cell line from Moore's spleen as a breach of his fiduciary duty to the patient; and (2) can Moore sue the research companies and others who have used the cell line for a share in their profits from it? In a five-to-two opinion, Justice Panelli, writing for the California Supreme Court, answered the first question affirmatively, but refused to grant the patient any ownership interest in his cells after they had been removed from his body. [2] The Doctor-Patient Relationship and Conflicts of Interests The California Supreme Court has been the nation's leader in the area of informed consent, deciding in 1972 that a physician had a "fiduciary" responsibility to the patient to disclose the nature of the proposed treatment, its alternatives, risks, and potential problems of recuperation. [3] Past cases have all concentrated on the patient's choice and enhancing that choice by providing "material" information to the patient that might cause him or her to accept or reject the proposed treatment. The California Supreme Court has now ruled that the doctrine of informed consent requires a full financial disclosure because failure to make a financial disclosure is a violation of trust that undermines patient autonomy. The goal is to protect patients from physicians whose judgment might be influenced by profit, and who might thus be in a conflict of interest position with their own patients. In the Court's words: a physician who treats a patient in whom he also has a research interest has potentially conflicting loyalties.... The possibility that an interest extraneous to the patient's health has affected the physician's judgment is something a reasonable patient would want to know in deciding whether to consent to a proposed course of treatment. It is material to the patient's decision and, thus, a prerequisite to informed consent. This is not to say that physician-researchers are evil-minded, or intentionally advocate procedures not in their patients' best interests, only that "consciously or unconsciously...the physician's extraneous motivation may affect his judgment." Selling Cells The remaining defendants, the Regents of the University of California, a researcher, and two corporations, are not physicians and thus have no independent fiduciary duty to the patient. The appeals court had found them potentially liable for conversion of Moore's property interest in his cells. The California Supreme Court, however, reversed this holding. …

On Being Ethical in Unethical Places: The Dilemmas of South African Clinical Psychologists

Abstract: Practicing under the social and economic conditions created by apartheid, South African clinical psychologists face the task of questioning both the traditional values and the traditional social role of their profession. Dilemmas of trust, confidentiality, and professional competence highlight the limits of professional ethical codes.

The Patient Self-Determination Act: not now.

Abstract: The Patient Self-Determination Act: Not Now The Patient Self-Determination Act is an idea whose time has not yet come. It aims for a laudable objective. Indeed, as poll after poll has shown, the American people overwhelmingly support that objective: ensuring that people's wishes about life-sustaining treatment are respected. But not only is the Act unlikely to achieve its objective; worse yet it will probably delay the existing movement toward that objective. Might federal intervention -- the use of a financial stick against institutions that receive Medicare and Medicaid funds--ever be justified? Were hospitals and other institutions intentionally thwarting patients' rights, Uncle Sam might have to threaten to cut off funds to get them to comply with existing policies. But this is a heavy-handed response that is often ineffectual, as illustrated by the three sets of federal "Baby Doe" regulations. Even the federal officials in charge of the original "Baby Doe Squads" were hard pressed to demonstrate any beneficial effects of their interventions; the only sure consequence was a great deal of resentment on the part of physicians and hospital personnel, along with more trips to the courthouse induced by fear of liability. In light of this experience, federal threats seem appropriate only as a last resort. No such provocation exists regarding living wills and durable powers of attorney. Over the past quarter century "advance directives" have evolved from merely hortatory statements to legally binding documents. The barriers to their use that remain--in personal reluctance to employ them and in ingrained professional attitudes--are rapidly being overcome. The Act will do little or nothing to reduce those barriers and is likely to erect new ones. Supporters of the Act say that it is just one more means of spreading the word about living wills and durable powers. But in actual implementation, the requirement that hospitals must inform patients of their rights to accept or refuse care and to appoint a surrogate to decide on their behalf will be less innocuous for several reasons. First, the moment when one enters the hospital and is confronted by an admissions clerk with various forms to be signed is not the right time to bring up living wills and the like. Nor is the person who plays this role likely to be able to explain the possible documents well and to enter into a discussion that would be truly educational rather than merely formalistic. The main concern of hospitals will be to get patients' signatures on a "Notice of Disclosure of Rights" or the like. Indeed, the "waiver" that patients would probably be asked to sign might well lead--in recognition of the leadership on this issue provided by the senior Senator from Missouri--to the query "Was the patient Danforthed? …

Practice verus theory.

Abstract: KIE: In this review essay, Jonsen is concerned with the relationship between theory and practice in bioethics, a concern he finds reflected in three recent books: the third edition of Principles of Biomedical Ethics, by T. Beauchamp and J. Childress (Oxford University Press; 1989); Moral Theory and Moral Judgments in Medical Ethics, edited by B. Brody (Kluwer Academic; 1988); and Theory and Practice in Medical Ethics, by G.C. Graber and D.C. Thomasma (Continuum; 1989). Jonsen questions the contemporary presumption that "theory is an inseparable companion to practice," arguing that the role, function, and meaning of ethical theory are not clear. He predicts increasing debate between "philosophers" who seek to formulate theory that might be applied to practice, and "casuists" who find theory an obstacle to practical resolution of medical dilemmas.

The price of silence.

Abstract: Fletcher and Wertz introduce a case study involving a woman just diagnosed with Huntington's disease (HD). The patient refuses to disclose the diagnosis to family members or to her employer for fear of being ostracized. She also refuses to cooperate in further testing that could identify other family members at risk for developing HD. Fletcher and Wertz ask what physicians in this case should do, if anyone besides the patient should be told of her diagnosis and its implications for her family, and if public health departments should require physicians to notify persons at risk for HD. Ethicists and geneticists from four countries (A. Lynch, Canada; A. Czeizel, Hungary; F.M. Salzano, Brazil; K. Berg, Norway) comment on the ethical conflict between the duty to respect patient confidentiality and the duty to disclose important medical information affecting third parties.

Choosing death for Nancy Cruzan.

Abstract: Choosing Death for Nancy Cruzan In Cruzan v. Harmon, [1] the United States Supreme Court will, for the first time, decide whether a guardian has a constitutional right to require that all nutrition and hydration be with-held from an incompetent ward. Beyond the constitutional issues are troubling questions of medicine and ethics and how we are to care for people like Nancy Cruzan. Regardless of the outcome of Cruzan, these issues will continue to plague the courts until a satisfactory resolution is achieved. Informed Refusal of Medical Treatment Nancy Cruzan's parents are claiming standing to assert her right to be free from "unwarranted bodily intrusions," a right they contend is violated since Nancy "is being subjected to ongoing, state-ordered medical treatment against her wishes." But is Nancy's tube feeding, in fact, against her wishes? Since she is currently incompetent, and thus unable to make a decision, the question must be whether she expressed her wishes prior to the accident in a way that must be given legal effect. The Missouri Supreme Court answered this question negatively based upon the legal theory of informed consent. [2] The requirement that a competent patient give informed consent before treatment is based upon the law's respect for the individual autonomy of each person to make decisions relating to his or her health and welfare. [3] Informed consent requires: that the patient have the capacity to reason and make judgments; that the decision be voluntary and uncoerced; and that there be a clear understanding of the nature of the disease and its prognosis. [4] Since, under hypothetical circumstances, neither the benefits nor the risks of treatment can be properly weighed, any statements Nancy made prior to her automobile accident regarding life-sustaining treatment did not constitute informed refusal of care. Her parents have argued that "Nancy's statements alone are enough to stop this artificial treatment." These statements were summarized in the testimony of Nancy's roommate to the effect that she "would not want to continue her present condition without hope as it is." But, the court found these statements "unreliable for the purpose of determining her intent." Similar statements have been rejected by other courts when they were "remote, general, spontaneous, and made in casual circumstances." [5] Another court noted that "If such statements were routinely held to be clear and convincing proof of a general intent to decline all medical treatment once incompetency set in, few nursing home patients would receive life-sustaining medical treatment in the future." [6] Thus, such statements - short of informed refusal - are not a sufficient basis for withdrawing Nancy's feeding. Constitutional Standing of Guardians In their appeal to the U.S. Supreme Court, Nancy's parents appear to concede the point that her previous expressions do not constitute informed refusal. However, they claim that, while the Missouri court "did not dispute that these long protected autonomy rights exist for competent persons, it "erred dramatically ... when it held that because Nancy is permanently unconscious, she has lost the constitutional right ... to have her family or another surrogate decision-maker participate in her medical treatment decisions ...." [7] That is, the Cruzans' attempt to claim authority over Nancy as both her parents and her guardians. It is clear, however, that they have no authority over Nancy "as her parents." Parents do have independent constitutional rights to the care and custody of their minor children, [8] but Nancy, now thirty-two years old, was a married adult woman when the accident occurred. Thus, the parents' right to participate in medical treatment decisions cannot be derived from their relationship to her as parents, it could only be derived from their role as guardian. The U.S. Supreme Court has never held that the rights of one person are wholly transferrable to a surrogate, by operation of constitutional law, when the person is herself unable to exercise them. …

Common law morality.

Abstract: KIE: Arras reviews AR Jonsen and S Toulmin's The Abuse of Casuistry: A History of Moral Reasoning (University of California Press; 1988) Jonsen and Toulmin, both of whom worked with the federal National Commission for the Protection of Human Subjects, critique the role of ethical theory in practical deliberation and attack the belief that moral theories are "universal, mutually exclusive sources ofethical truth" They argue that "all genuine ethics is already concrete and particular," and champion casuistical reasoning with its emphasis on particularity and practical judgment Arras find The Abuse of Casuistry to be "a fascinating and thought-provoking study of moral methodology that will enrich our understanding of moral reasoning and quicken the ongoing debate over the appropriate role of ethical theory in bioethical analysis" He questions, however, the authors' faith in casuistry as the means to achieve social consensus on biomedical controversies

Foreclosing the use of force: A.C. reversed.

Abstract: William Carlos Williams relates how he once used force to pry open the mouth of a recalcitrant child who, he suspected, had diphtheria that could only be diagnosed by viewing her throat.(1) The little girl resists his coaxing, and when, with the father's help, he finally manages to jam the wooden tongue depressor between her teeth, the child opens her mouth just enough to crunch down on the blade to "reduce it to splinters." The doctor becomes furious with the child, whose mouth is now bleeding and who is "screaming in wild hysterical shrieks." But he knows he must see her throat for her own good, and it actually becomes "a pleasure to attack her ... The damned little brat must be protected against her own idiocy... " Using a metal spoon and all his strength, he overpowers the child "in a final unreasoning assault ..." He learns her secret: she has diphtheria. We can agree that Williams lost control and brutalized his child patient, yet still sympathize with him. Diphtheria was a life-threatening disease, and the child could not make a competent decision to refuse to have the doctor look at her throat. Moreover, her parents were present, and consented to the entire proceeding. It was the means not the rationale that was wrong. The Right Track The use of force has little, if any, role in the practice of medicine, although it may sometimes seem necessary in treating children and mentally incompetent patients. The 1980s, a decade not known for its compassion, saw some physicians and judges moving beyond children and the mentally incompetent to encompass pregnant women in the group of patients for whom forcing compliance was sometimes seen as justifiable. The rationale was not that pregnant women were incompetent to make their own decisions, but rather that some of the decisions they made might take inadequate account of the possible consequences of those decisions on the soon-to-be-born child. Although there have been dozens of lower court opinions involving attempts to force treatment, usually cesarean sections, on pregnant women, only two have reached appeals courts. The first, Jefferson v. Griffin Spalding Hospital Authority,(2) was at the beginning of the 1980s. The second opens the 1990s on an entirely different note and is the most important case to be decided in this area to date: the case of Angela Carder, known simply as In re: A.C..(3) This new en banc decision, issued by the District of Columbia Court of Appeals almost three years after the original hearing (and two years after the original three judge appeals decision was vacated), firmly reverses the original decisions (7 to 1) and sets forth the legal principles that should govern all doctor-patient relationships with pregnant patients: "We hold that in virtually all cases the question of what is to be done is to be decided by the patient-the pregnant woman-on behalf of herself and the fetus. If the patient is incompetent ... her decision must be ascertained through ... substituted judgment" (emphasis added). Angela Carder was twenty-six-and-a-half weeks pregnant and near death from cancer when the hospital's lawyer decided to ask a judge to come to the hospital to tell the hospital what to do. The request was made because Angela's attending physicians had informed the hospital administrator that they intended to honor the patient's wishes to keep her comfortable while she died, and not perform an immediate cesarean section. The patient, all members of her family (her husband and her mother), and all her attending physicians agreed on this course of action. The issue at the hearing was not what Ms. Carder wanted, but centered instead on whether the state had a compelling interest sufficient to force immediate surgery for the sake of the fetus. Accordingly, the testimony focused on the likelihood of fetal survival if surgery were performed immediately, rather than waiting until after Ms. Carder died (she was expected to die within forty-eight hours in any event) to deliver the fetus. …

Organ Transplantation: A Paradigm of Medical Progress

Abstract: Organ Transplantation: A Paradigm of Medical Progress Returning from Rome to Chicago recently in seat 23A of a Boeing 747 operated by British Airways I felt a magical sense of relief from the complexities of daily living. This world full of human beings seemed temporarily at peace from the vantage point of six miles up. It occurred to me that each one of us should, on occasion, pull back from the everyday intensity of moral decision-making and simply document certain human processes as they occur. A clear pattern of behavior would likely emerge. Given the wisdom of time and overview, we would all make fewer judgmental errors and moral definition would be better served. Such posture would be particularly suited to the evolution of biomedical technology of the past thirty years. Open heart surgery, organ transplantation, and development of biomechanical devices each illustrate the wisdom of exercising caution when drawing moral conclusions in the short haul. Many of my colleagues and I wonder if development of these technologies would even be possible in today's milieu of legal and ethical constraints. Yet each is contributing greatly to the welfare of mankind. I should like to develop discussion of one particular technology, organ transplantation, simultaneously along three avenues. These include: transplantation as a technique and as a therapy - as an every-day reality. I want to discuss how it got here, why it is here to stay, and why there will be more of it in the future. Secondly, I want to consider transplantation as a science. Why much of the original work seemed doomed to fail; why science is forced to catch up with transplantation and how science has helped transplantation become a permanent fixture in modern therapy of end-stage organ diseases. Finally, I want to talk about transplantation as a social phenomenon. I want to consider the definition of death; distribution of resources; and imposed limitations on progress in this most visible of therapeutic realities. In addition, I would like to lace this discussion with enough examples to personalize transplantation for me as a physician and for you as philosophers. And I would like to share with you a few phrases such as "bioethical perspective" or another way of saying bioethical wisdom, and "predictive bioethics," which is another, if somewhat dangerous, way of approaching the question: What if? You may also want to contemplate "reactive bioethics" and all that term implies. Please don't think that I in any way believe biomedical ethics is adversarial to medical and surgical progress. In fact. I strongly support philosophical interest in the direction biomedical scientists and practitioners are taking technology today. I believe professionals in biomedical ethics are and will continue to make an enormous impact on our understanding of how technology relates to the human condition. Bioethical perspective (or wisdom) may bring us full around from the sterile, so-called scientific method to the Hippocratic holism that reminds us all that we are, finally, human beings. I simply want to offer a few thoughts to see if you might relate to them in some way as being helpful in our joint assessment of organ transplantation as an example of medical progress. When I arrived in the hotel in Chicago, there was a message requesting that I call Marsha Dunn, a wire service reporter. She was at another hotel in the same city covering an important meeting of transplantation specialists, and was just finishing a story on the dilemmas of anencephalic babies as organ donors that highlighted an infant friend of mine named Paul Holc. Paul is notable in the world of transplantation for being the youngest person ever to receive a solid organ transplant. More importantly and sadly, he remains the only person in history to be living with the transplanted heart of an anencephalic infant. There are many good, practical people on this planet who felt that transplanting Paul's heart was a wonderful and compassionate thing to do, both for Paul and his family and for the family of the donor. …

An Alternative to Property Rights in Human Tissue

Abstract: A three-tiered legal structure of the substances constitutive of human beings can accommodate property rights in new products created by the investment of labor in human tissue.