The Patient in the Family diagnoses the ways in which the worlds of home and hospital misunderstand each other. The authors explore how medicine, through its new reproductive technologies, is altering the stucture of families, how families can participate more fully in medical decision-making, and how to understand the impact on families of medical advances to extend life but not vitality.

Moral psychology studies the features of cognition, judgement, perception and emotion that make human beings capable of moral action. Perspectives from feminist and race theory immensely enrich moral psychology. Writers who take these perspectives ask questions about mind, feeling, and action in contexts of social difference and unequal power and opportunity. These essays by a distinguished international cast of philosophers explore moral psychology as it connects to social life, scientific studies, and literature.

The authority of surrogates—often close family members—to make treatment decisions for previously capacitated patients is said to come from their knowledge of the patient, which they are to draw on as they exercise substituted judgment on the patient’s behalf. However, proxy accuracy studies call this authority into question, hence the Patient Preference Predictor (PPP). We identify two problems with contemporary understandings of the surrogate’s role. The first is with the assumption that knowledge of the patient entails knowledge of what the (...) patient’s choice of treatment would be. The second is with the assumption that a good decision reproduces the content of that choice. If we are right, then the PPP, helpful though it might be in guiding surrogates’ decisions, nevertheless would hold them to the wrong standards and in that way could add to, rather than relieve, the stress they experience as they try to do their job. (shrink)

: A fascinating criticism of abortion occasioned by prenatal diagnosis of potentially disabling traits is that the complex of test-and-abortion sends a morally disparaging message to people living with disabilities. I have argued that available versions of this "expressivist" argument are inadequate on two grounds. The most fundamental is that, considered as a practice, abortions prompted by prenatal testing are not semantically well-behaved enough to send any particular message; they do not function as signs in a rule-governed symbol system. Further, (...) even granting, for the sake of argument, the expressive power of testing and aborting, it would not be possible, contra the argument's proponents, to distinguish between abortions undertaken because of beliefs about the disabling conditions the fetus might face as a child and abortions undertaken for many other possible reasons--e.g., because of the poverty the fetus would face or the increase in family size that the birth of a new child would occasion. Here, I respond to criticisms of those arguments, and propose and defend another: the expressivist argument cannot, in general, distinguish successfully between abortion and therapy as modalities for responding to disabilities. (shrink)

: Prenatal and preconceptual testing and screening programs provide information on the basis of which people can choose to avoid the birth of children likely to face disabilities. Some disabilities advocates have objected to such programs and to the decisions made within them, on the grounds that measures taken to avoid the birth of children with disabilities have an "expressive force" that conveys messages disrespectful to people with disabilities. Assessing such a claim requires careful attention to general considerations relating meaning, (...) intention, and social practices; it has only begun to receive such attention. Building on work by Allen Buchanan, who has challenged this claim, I further consider the disabilities advocates' objection, ultimately concluding that it is misplaced; neither individual actions nor general practices of this type necessarily express disrespectful messages. (shrink)

We should not always expect parents to put their children first.

Surrogate motherhood-at least if carefully structured to protect the interests of the women involved-seems defensible along standard liberal lines which place great stress on free agreements as moral bedrocks. But feminist theories have tended to be suspicious about the importance assigned to this notion by mainstream ethics, and in this paper, we develop implications of those suspicions for surrogacy. We argue that the practice is inconsistent with duties parents owe to children and that it compromises the freedom of surrogates to (...) perform their share of those duties. Standard liberal perspectives tend to be insensitive to such considerations; we propose a view which takes more seriously the moral importance of the causal relationship between parents and children, and which therefore illuminates rather than obscures the stake that women and children have in surrogacy. (shrink)

In the portion of their reply directed to me, Professor Asch and Dr. Wasserman helpfully develop the synecdoche argument by highlighting its connections to stigma. I understand them to distinguish the situation of a woman making a decision concerning her pregnancy informed by prenatal testing from a woman making a similar decision informed by considerations of, for example, poverty, like so: In testing contexts, it will characteristically be the case that the woman's decision will be distorted by the stigma associated (...) with impairment: She will consider only the fact that, should her pregnancy come to term, the child would be impaired; she will not be able to attend in a satisfactory manner to a fuller range of possible features, both good and bad, that may characterize the child's life and her experience of being the child's parent. The woman considering whether to terminate her pregnancy due to, say, poverty will, in contrast, typically be able to deliberate in ways more responsive to a broader range of relevant matters, as the possible child's poverty will not be the only thing she is in a position to take into account about her or his life and their life together. Further, even where poverty or some other factor influencing decisions about terminating or continuing pregnancy are stigmatizing, they are not as thoroughly stigmatizing as are impairment-related conditions, due to prevalent confusions about the immutability of traits seen as biological rather than social. (shrink)

Both of the main points in Professor Murphy's paper seem to me clearly and effectively argued.1 It is incontrovertible that some people find hurtful the use of medical technologies to avoid the birth of children who, in the present order of things, would be disabled. No result from the philosophy of language, or anywhere else for that matter, can plausibly show otherwise. Indeed, even to speak of ‘legitimately interpreting’ events that cause one pain as ‘hurtful’, as Murphy does, seems a (...) shade too conciliatory to any who has the temerity to doubt this matter: typically, at least, I don't interpret a state of affairs as hurtful. I experience it so—or not.He's quite right to point out as well that the fact that someone's actions cause another to feel hurt does not, on its own, imply much of anything about the action's propriety. There are many serious people who are deeply distressed by others' reproductive choices that have nothing to do with disability: terminating a pregnancy for any reason causes some people considerable pain. Yet there seems no reason whatever to regard that pain, considered on its own, as a reason that—at least in general terms—should bear on a person's decision concerning whether or not to give birth to the fetus that she is gestating.Expressivist arguments, so understood, then, seem to have had their measure taken. If anyone had the temerity to think that no one is hurt by choices to avoid or end pregnancies because they might lead to the birth of a child who would be disabled, they can drop that thought right now. On the other hand, if someone thought that the hurt suffered by such people constitutes a serious reason for restricting what others can find out about their potential or actual pregnancies, or …. (shrink)

It has recently been argued by Miller and Truog (2008) that, while procuring vital organs from transplant donors is typically the cause of their deaths, this violation of the requirement that donors be dead prior to the removal of their organs is not a cause for moral concern. In general terms, I endorse this heterodox conclusion, but for different and, as I think, more powerful reasons. I end by arguing that, even if it is agreed that retrieval of vital organs (...) causes the deaths of those who provide them, that does not pose any new substantive difficulties for efforts to justify “opt-out” organ procurement systems. (shrink)

There is reason to believe that procuring organs from recently dead people who did not explicitly refuse to provide them—here referred to as “opt-out” arrangements—would ease growing shortages, thus extending the lives of many who otherwise would die soon. There is also a simple, apparently powerful argument—the “easy rescue requirement”—for believing that many people have strong moral reason to provide such life-extending support to others, thus bolstering the case for implementing opt-out systems. Here I consider two broad types of feminist (...) reservations about opt-out arrangements, one concerning the motivating argument, the other concerning ways in which opt-out practices might disproportionately burden women. I conclude that both reservations can be answered sufficiently so as to encourage further feminist reflection on opt-out proposals and easy rescue arguments. (shrink)

: Bioethical discussion of justice in health care has been much enlivened in recent years by new developments in the theory of rationing and by the emergence of a strong communitarian voice. Unfortunately, these developments have not enjoyed much in the way of close engagement with feminist-inspired reflections on power, privilege, and justice. I hope here to promote interchange between "mainstream" treatments of justice in health care and feminist thought.

Most people accept that if they can save someone from death at very little cost to themselves, they must do so; call this the ‘duty of easy rescue.’ At least for many such people, an instance of this duty is to allow their vital organs to be used for transplantation. Accordingly, ‘opt-out’ organ procurement policies, based on a powerfully motivated responsibility to render costless or very low-cost lifesaving aid, would seem presumptively permissible. Counterarguments abound. Here I consider, in particular, objections (...) that assign a moral distinctiveness to the physical boundaries of our bodies and that concern autonomy and trust. These objections are singled out as they seem particularly pertinent to the stress I place on a distinctive benefit of the particular policy I defend. An opt-out system, resting not on the authority of ‘presumed consent’ but on the recognition of a duty to one another, has the prospect of prompting people to understand more richly the ways in which they are both physically embodied and communally embedded. (shrink)

Some 14 years ago, I published an article in which I identified a prime site for bioethicists to ply their trade: medical responses to requests for hormonal and surgical interventions aimed at facilitating transgendered people’s transition to their desired genders. Deep issues about the impact of biotechnologies and health care practices on central aspects of our conceptual system, I argued, were raised by how doctors understood and responded to people seeking medical assistance in changing their gender, and there were obviously (...) significant issues of regulation involved as well. Yet mainstream bioethics was conspicuous by its relative absence from the discussion. Here, I return to the matter and find that, while the conceptual issues are just as profound and their connection to health care practice and policy just as intimate, even as transgender issues have become much more socially visible, bioethical engagement with gender reassignment has increased only slightly. I set the little movement that has occurred against the backdrop of the situation as I saw it in 1998 and conclude, once again, by trying to make the bait for bioethicists inviting. (shrink)

: The President's Council on Bioethics has tried to make a distinctive contribution to the methodology of such public bodies in developing what it has styled a "richer bioethics." The Council's procedure contrasts with more modest methods of public bioethical deliberation employed by the United Kingdom's Warnock Committee. The practices of both bodies are held up against a backdrop of concerns about moral and political alienation, prompted by the limitations of moral reasoning and by moral dissent from state policy under (...) even the most democratic of governments. Although the President's Council's rhetoric is often scrupulously conciliatory, recurring features of its argumentative practice are regrettably divisive. They order these things better in Britain. (shrink)

Midway in Martha Holstein’s article, these words occur: “[P]eople [should] get the help they need, when they need it, in the way that they would like to receive it, without exploiting family members or imperiling their dignity or self-respect” (24). In an essay that brims over with worrisome news, that this seemingly anodyne sentence appears in the section devoted to utopian thinking is perhaps the most dispiriting thought it conveys. Not that there isn’t keen competition for the role. Holstein reminds (...) her readers that the roots of the present and building crisis in long-term care sink deeply into an ideology especially entrenched in the United States; she suggests, as well, that the pernicious norms.. (shrink)

In her final fragmentary novel Sanditon, Jane Austen develops a theme that pervades her work from her juvenilia onward: illness, and in particular, illness imagined, invented, or self-inflicted. While the “invention of odd complaints” is characteristically a token of folly or weakness throughout her writing, in this last work imagined illness is also both a symbol and a cause of how selves and societies degenerate. In the shifting world of Sanditon, hypochondria is the lubricant for a society bent on turning (...) health into a commodity. As a result, people’s rationality and their moral character come under attack. Catherine Belling’s recent subtle study, A Condition of Doubt: The Meanings of Hypochondria, unveils hypochondria’s discursive and cultural character. Running sharply against the tenor of Austen’s treatment, however, she argues in defense of the rationality of hypochondriacs; the notion that the condition may involve morally significant defects is not entertained; any connection to the commercialization of health care is muted. Here, I contrast Austen’s morally and epistemically negative rendering of her hypochondriacal characters in Sanditon with Belling’s efforts to create a sympathetic understanding of people with hypochondria. I will argue that, despite time gaps and genre differences, joint consideration of these texts can help bioethicists better appreciate how medicine can intensify, pathologize, and exploit anxieties about illness and death, thus adding to the challenges of living well in the face of mortality and morbidity. (shrink)

Most available resources for teachers and students in biomedical ethics are based on a notion of medicine and of how to understand and illuminate its ethical problems that is at least two decades old. Meaning and Medicine dramatically expands the repertoire of resources for teachers and students of bioethics. In addition to providing fresh perspectives on both traditional and emerging questions in bioethics, this Reader focuses on questions in social philosophy, epistemology, and metaphysics as they are raised by developments in (...) contemporary health care. A chief aim of this resource is to rekindle interest in seeing health care not solely as a set of practices so problematic as to require ethical analysis by philosophers and other scholars, but as a field whose scrutiny is richly rewarding for the traditional concerns of philosophy. (shrink)

A certain pupil with the vaguely Kafkaesque name B has mastered the series of natural numbers. B's new task is to learn how to write down other series of cardinal numbers and right now, we're working on the series "+2." After a bit, B seems to catch on, but we are unusually thorough teachers and keep him at it. Things are going just fine until he reaches 1000. Then, quite confounding us, he writes 1004, 1008, 1012."We say to him: 'Look (...) what you've done!'—He doesn't understand. We say: 'You were meant to add two: look how you began the series!'—He answers: 'Yes, isn't it right? I thought that was how I was meant to do it.'"1B may be an "abnormal learner," but he's not unique among learners in literature. Another .. (shrink)

How ought we to understand the sources and limits of the authority of family members to make health care decisions for their decisionally incapacitated relatives? This question is becoming increasingly crucial as the population ages and the power of medical technology waxes. It is also becoming increasingly contested, as faith in advance directives shows signs of waning, and the moral complexities of intimate relationship become more theoretically patent.This last point—the newly visible moral richness of intimate relationship—provides this paper with its (...) field. I am interested in probing the images of the relationship between self and other, particularly self and intimate other, that seem presupposed by some leading attempts to determine the basis for proxy decision-making authority, and what constraints it must observe. In the light of both recent work in the philosophy of mind and considerations closer to common experience, the reigning images seem too slight to support the weight of current practices and beliefs about proxy authority; supplanting them with images more faithful to our experience will have implications for our practice with proxies. (shrink)

Our response to Sara Fry's paper focuses on the difficulty of understanding her insistence on the fundamental character of caring in a theory of nursing ethics. We discuss a number of problems her text throws in the way of making sense of this idea, and outline our own proposal for how caring's role may be reasonably understood: not as an alternative object of value, competing with autonomy or patient good, but rather as an alternative way of responding toward that which (...) is of value. (shrink)

In this paper, I consider what kind of normative work might be done by speaking of ecosystems utilising a 'medical' vocabulary – drawing, that is, on such notions as 'health', 'disease', and 'illness'. Some writers attracted to this mode of expression have been rather modest about what they think it might purchase. I wish to be bolder. Drawing on the idea of 'thick' evaluative concepts as discussed by McDowell, Williams and Taylor, and resorting to a phenomenological argument for a kind (...) of moral realism, I argue that the project of developing a robust understanding of the moral significance of recognising the health or illness of ecosystems is definitely a starter. (shrink)

Disputes about theory in bioethics almost invariablyrevolve around different understandings of morality or practicalreasoning; I here suggest that the field would do well to becomemore explicitly contentious about knowledge, and start the taskof putting together a clinical epistemology. By way of providingsome motivation for such a discussion, I consider two cases ofresistance to shifts in clinical practice that are, by and large,not ethically controversial, highlighting how differentconceptions of epistemic authority may contribute to clinicians'unwillingness to adopt these changes, and sketching out (...) someinitial suggestions for epistemic analysis of clinical practice. (shrink)

The "grassroots turn" in bioethical discussions about justice in allocation of health care resources has attracted a great deal of support; in the absence of a convincing theory of justice in rationing, democratic decisionmaking concerning priority setting emerges with a kind of inevitability. Yet there remain suspicions about this approach – most importantly, worries about the socially corrosive impact of explicit, public decisionmaking that in effect sets a price on the lives of persons. These worries have been quieted, particularly by (...) the work of Leonard Fleck, but not altogether stilled. I explore more sympathetically the ideals to which concerns about public rationing somewhat dimly respond, and suggest constraints on priority setting discussions which might accommodate those ideals rather better. Keywords: "grassroots" decisionmaking, publicity principle, pricing life, rationing health care CiteULike Connotea Del.icio.us What's this? (shrink)

Jonathan D. Moreno and Sam Berger, Progress in bioethics: Science, policy, and politics, Cambridge, Mass.: MIT Press, 2010, reviewed by James Lindemann Nelson.