Contributors

Many bioethical disputes are conceptual. This means that people quarrel about the use of words that they see as important. The underlying idea is that whoever wins the verbal argument will also be ethically right.

With the considerable attention given to UNESCO's Universal Declaration on the Human Genome and Human Rights, the time has come to take another look at the concept of dignity, on which this document is morally founded. The term “dignity” now appears in many national constitutions and international bioethical statements. It has also become popular among Continental European ethicists, many of whom wish to challenge the particularly American and overtly individualistic principles of “autonomy,” “justice,” “beneficence,” and “nonmaleficence.”This paper was produced as a part of the project Genes, Information, and Business, financed in 2000–2003 by the Academy of Finland. The first draft was presented at the fourth International Bioethics Retreat in Paris, May 2001. My thanks are due to the participants of the meeting for their constructive comments and suggestions.

In discussions among nonphilosophers, the ethical argument from naturalness frequently comes up. “Of course, cloning should be banned—it is unnatural.” “Surely you cannot deny that homosexuality is unnatural (and hence it should be condemned).” “The immorality of gene technology is apparent because things like that do not happen in nature. Genes do not jump between species and crossbreeding produces infertile offspring.” Even those who come from a philosophical background can catch themselves thinking, “That is unnatural!” and finding grounds for suspicion from the thought. But what do we mean when we talk about (im)morality and (un)naturalness? What interpretations can be given to the ideas of natural and unnatural in ethical discussions? What are the implications of these interpretations? Are there good grounds for assuming that naturalness is morally better than its opposite?This paper was first presented at the Fourth International Bioethics Retreat in Paris, May 2001. I wish to thank the participants for their comments on my paper. This paper was produced as a part of the project Genes, Information, and Business, financed in 2000–2003 by the Academy of Finland.

In this paper I examine the ways in which the concept of “public interest” is used in biomedical policymaking to justify the preemption or overruling of decisions made by individuals about their own, their family's, or group interests in the field of healthcare. I discuss six variants of public-interest justification, before going on to consider a concrete example, the use of personal health data in health services management and medical research. I distinguish between the global public interest and particular public interests and consider critically how the global public interest can be said to arise from private interests. I show that there is always room for the private individual to defeat appeals to public interest on moral grounds, and hence that public interest cannot have overriding moral force. Hence, public-interest claims need to be considered as political appeals about competing claims and conceptions of justice, rather than as shortcuts to defining the universal solidary interest.

Communities are the chief source of philosophical sloppiness these days. Varying endlessly across the entire range of human experience, communities raise the specter of moral relativism that makes ethics sometimes seem a misguided and futile enterprise. Yet the language of communities and their multitude of norms, preferences, and principles present an opportunity, and challenge, to confront abiding moral problems in immeasurably richer and more novel ways. But neither the opportunities nor the challenges were always obvious. On the contrary, the origins of the Enlightenment coincide with an assault on the disharmony posed by restless and unruly communities.

This article attempts to clarify the concept of disability by explaining the ways in which it has been applied, and defined, by both philosophers and disability scholars. Conceptual approaches to disability can be divided into two main categories: the individualistic and the social approaches. In the individualistic framework, disability is seen as an individual condition that results in a disadvantaged position regarding civic, economic, and personal flourishing. This is the dominant view of disability in bioethics. According to the social approaches, disability is seen as a result of the oppressive material arrangements in existing societies, or as a corollary of the prevailing cultural values, ideas, attitudes, and language that produce and shape human reality. I argue that disability is essentially a normative concept that reflects the idea of what kind of beings humans ought to be, or, how society ought to be constructed to treat its members equally. In other words, the essential core of the concept of disability is ethical, and this implies that ethical examination is needed to provide a fuller picture of disability as a physical, psychological, and social phenomenon.Thanks to Matti Häyry, Tuija Takala, and Tanja Vehkakoski for their useful comments. This paper was produced as a part of the project Genes, Information, and Business, financed in 2000–2003 by the Academy of Finland.

One of the core issues in medical ethics has been and still is autonomy, people's right to make their own self-regarding choices in situations where more than one option is available. Depending on the case, these choices may be influenced by personal life history, one's ethical and other values, and one's future expectancies. A professional soccer player may risk an operation, which for a less athletic individual would represent an unnecessary risk that might jeopardize her ability to even walk. Saying no to painkillers may sound irrational to those who do not see anything ennobling in avoidable suffering, and preferring homeopathic medicine to more evidence-based medicine may lead others to seriously doubt the logic of one's thinking. But although these situations may be difficult,1 they seldom lead to an impasse. Even if serious value conflicts emerge in these patient–medical personnel encounters, they can be overcome by the fact that, in Western countries, honoring patients' autonomy has been widely accepted as part of medical professionalism.

These CQ Sources were compiled by Bette Anton.

The emerging phenomenon of genetic paternity testing shows how good science and useful social reform can run off the rails. Genetic paternity testing enables us to sort out, in a transparent and decisive way, the age-old but traditionally never-quite-answerable question of whether a child is genetically related to the husband of the child's mother. Given the impossibility of settling this question for certain, British and American law has long held that a biological relationship must almost always be assumed to exist. According to what is known as the “marital presumption” or “presumption of legitimacy,” a child born to a woman within a marital relationship is assumed to be the biological child of the woman's husband unless he was absent, impotent, or sterile. In other words, if paternity was not a physical impossibility for the husband, there was a nearly irrebuttable presumption that he was the father of the child. The husband was locked into the role of fatherhood.I am grateful to the participants of Genetic Ties and the Future of the Family, a research project run conjointly by The Hastings Center and the Institute for Bioethics, Health Policy, and Law at the University of Louisville School of Medicine. Discussions held in the course of this project have influenced this paper in various ways. I am especially grateful to Mary Anderlik for detailed comments. An earlier version of this paper was presented at the 2002 annual meeting of the American Society of Bioethics and Humanities and at a colloquium at Oxford University on Genetic Technologies and the Family, and the paper has benefited from comments offered on each of those occasions. Funding for Genetic Ties and the Future of the Family is provided by the National Institutes of Health (grant #HG02485).

As the issue of assisted dying continues toward more expanded legal standing, we shift our primary focus from questions of patients' rights to the largely overlooked challenges that face physicians who elect to assist patients in ending their lives. Dr. Howard Grossman, a Manhattan internist and plaintiff in the unsuccessful New York lawsuit to the Supreme Court (Vacco v. Quill), came forward to say, “Anybody who has done it knows that it is a tremendous decision that you carry with you forever.”1 We focus our attention on the psychological experience and philosophical conflicts faced by physicians engaged in physician-assisted dying (PAD). Based on those potential conflicts, we argue for a new model of the physician and patient relationship in assisted dying: a medical friendship.We wish to express our most sincere appreciation to all the physicians who spoke so openly and generously about what can only be described as profound and life-altering experiences with dying patients. We also wish to thank the Section of Philosophy and Medical Ethics of the Vrije Universiteit Medical Center (Professor Evert van Leeuwen, Ph.D., Chair) for consenting to serve as the host institution for this study. This project was also made possible by a generous grant from the Research Foundation of the Professional Staff Congress of the City University of New York.

The following papers evolved as a continuing discussion begun by John Harris in his paper “Stem Cells, Sex, and Procreation” (CQ Vol 12, No 4). First, Julian Savulescu responds to the Harris paper, with Harris following with a response to Savulescu. Next, the two authors suggested a joint paper in which, despite their continuing differences, they would examine where they agree. This remarkable collection of papers, presented here, is a rare opportunity to follow the developing thoughts of two of today's most influential philosophers through what they describe as “a somewhat tortuous process of reason and argument.” They test their own positions as they challenge the views of the other, and they discover points at which their intellectual paths converge.

John Harris gives a comprehensive and generally valid defense of embryo research. Although nearly all his arguments are valid, one—the argument comparing natural reproduction to embryo research—is problematic in several important ways. I focus here on that argument.

I have argued that because human sexual reproduction inevitably involves the creation and destruction of embryos, it is a problematic activity for those who believe that the embryo is “one of us.” Or, if it is not a problematic activity, then neither is the creation and destruction of embryos for a purpose of comparable moral seriousness—the development of lifesaving therapy, for example. I assume that, whereas it is possible for the very first act of unprotected intercourse to result in a live human baby, and hence not in a given case cause any embryo loss, this is a rare event and that, statistically, for every live birth from three to five embryos must be created only to die. For dramatic effect, I assume that five is a reasonable figure, giving each embryo a 20% chance of survival; however, nothing in the argument depends on any specific figures being correct.Søren Holm has been an important source of ideas for this paper. Julian Savulescu has also been very generous in commenting in detail on this paper, and I have taken account of the critique that I have received.

Opponents of destructive embryo research, such as embryo rightists, as well as proponents accept that natural reproduction is permissible. There is an alternative to natural reproduction—to remain childless. John Harris began this series of articles by asking, what does a commitment to the permissibility of natural reproduction entail? Harris has argued that a commitment to the permissibility of natural reproduction entails a commitment to the permissibility of destructive embryo research. Julian Savulescu has denied this. However, there are significant areas in which our views have converged.

Our ethics committee is revising the organization's policy on forgoing life-sustaining treatment. The current policy now includes the statement, “When life-sustaining treatment is forgone, supportive care will be provided to relieve pain and ensure the patient's comfort, unless the patient or surrogate refuses those measures.” Is it reasonable, however, for the surrogate to have the authority to refuse consent for pain medication and/or other supportive care?

Like some ethical dilemmas, this question has an obvious answer that may not be right. On first reflection, it seems entirely unreasonable and inappropriate to expect staff members to withhold supportive care. Legally, a designated surrogate has the authority to refuse pain medication on the patient's behalf, but is it ethically defensible? A patient lacking decisionmaking capacity is crying out in pain; can we really imagine just closing the door? What do we say to other patients, visitors, and staff members, such as physicians, nurses, housekeepers, and dietary workers, who might hear the patient? Do we place a sign on the door, one noting that the surrogate has refused, on behalf of the patient, to authorize the administration of pain medication and that the hospital or nursing home must comply with the surrogate's decision?

Whether surrogate decisionmakers have the authority to refuse pain and symptom management measures on behalf of incapacitated patients is a particularly timely question to ask in this era of growing commitment to ensuring appropriate pain and symptom management measures for all patients.

All treatments, even those labeled as supportive, have burdens as well as benefits. Patients and their surrogates have the right to finally decide whether the offered treatment's cost-benefit calculation is acceptable.

The “right to die” litigation that dominated American healthcare jurisprudence in the last three decades of the twentieth century, culminating in the Supreme Court decisions in Cruzan, Glucksberg, and Quill, confirmed the almost unqualified right of competent patients to refuse any and all medical interventions, for any reason or no reason, even when those interventions may be absolutely essential to preserve life. Although the courts acknowledged certain “countervailing” interests of the states that must be taken into account when patients directly, or indirectly through designated surrogates, refuse “medically indicated” treatment, only rarely have those interests been deemed of sufficient weight to override the clearly articulated wishes of patients.