Jeffrey Blustein

This essay is written in the belief that questions relating to the treatment of impaired and imperiled newborns cannot be adequately resolved in the absence of a general moral theory of parent-child relations. The rationale for treatment decisions in these cases should be consistent with principles that ought to govern the normal work of parenting. The first section of this paper briefly examines the social contract theory elaborated by John Rawls in his renowned book A Theory of Justice and extracts from it normative principles that can guide us in our attempt to lay a rational foundation for parenthood. The second section clarifies the implications of a Rawlsian theory for the problem at hand by examining several standards that have been proposed for the treatment of impaired newborns: the strict right-to-life standard, the medical decision standard, and the quality-of-life standard. A Rawlsian standard, by contrast, is autonomy-based. That is, it would have us base our treatment decisions on consideration of the child's capacity for developing critical rationality in making decisions on his or her own. This standard, it is suggested, avoids morally objectionable features of the others.

Philosophically, the most interesting objection to the reliance on advance directives to guide treatment decisions for formerly competent patients is the argument from the loss of personal identity. Starting with a psychological continuity theory of personal identity, the argument concludes that the very conditions that bring an advance directive into play may destroy the conditions necessary for personal identity, and so undercut the authority of the directive. In this article, I concede that if the purpose of a theory of personal identity is to provide an answer to the question What is it for a person to persist over time?, then reflection on personal identity poses a potentially serious threat to the moral authority of advance directives. However, as Marya Schechtman observes, questions about how a single person persists through change are not what most of us are interested in when we think about who a person is. Rather, we are interested in what it means to say that a particular set of actions, experiences, and characteristics is that of a given person rather than someone else.

RÉSUMÉ: J'examine ici trois façons de défendre l'idée que les personnes ont individuellement une valeur. Je pars de la thèse selon laquelle la valeur des individus tient à la valeur de leurs qualités particulières. Je m'arrête alors sur l'objection que pour comprendre ce qui fait la valeur individuelle des personnes, il nous faut accorder une place distinctive à leurs conceptions d'elles-mêmes. L'approche par la conception de soi qui résulte de ces considérations se révèle problématique à l'examen, mais elle nous oriente vers une façon «kantienne», plus satisfaisante, de rendre compte de la valeur des individus. L'explication en question développe la doctrine des «deux points de vue» avancée par Christine Korsgaard et fait reposer ma valeur en tant qu'individu sur la dignité qui est la mienne en tant que maître d'œuvre de ma propre vie, un titre que personne d'autre ne peut avoir.

In this paper, we critically appraise institutions for people with disabilities, from residential facilities to outpatient clinics to social organizations. While recognizing that a just and inclusive society would reject virtually all segregated institutional arrangements, we argue that in contemporary American society, some people with disabilities may have needs that at this time can best be met by institutional arrangements. We propose ways of reforming institutions to make them less isolating, coercive, and stigmatizing, and to provide forms of social support the larger society denies many people with disabilities. Although these reforms far fall far short of abolition, they draw heavily on the work of disability scholars and advocates who call for the complete replacement of institutional arrangements with systems of supported living. The consideration of non-ideal-solutions is useful not only in reforming existing institutional arrangements, but in bringing disability scholarship and advocacy to bear on bioethics, which has paid little attention to institutions for people with disabilities. We intend this paper to redress the neglect within mainstream bioethics of the complex ethical problems posed by institutions.

What is a disability? What sorts of limitations do persons with disabilities or impairments experience? What is there about having a disability or impairment that makes it disadvantageous for the individuals with it? Are persons with severe cognitive impairments capable of making autonomous decisions? What role should disability play in the construction of theories of justice? Is it ever ethical for parents to seek to create a child with an impairment? This anthology addresses these and other questions and is a valuable addition to a growing interdisciplinary literature exploring issues at the intersection of disability studies, philosophy, and bioethics. Most of the authors are well-known from their previous work in the disability field and have already made significant philosophical contributions to it.

The meaning of valid proxy consent for children has recently been the subject of an important debate between Richard McCormick and Paul Ramsey on the ethics of experimenting with children. Ramsey is willing to agree with McCormick that parental consent for a child to undergo some medical procedure is valid only if parents consider what the child would consent to if he could. But beyond this, Ramsey has a fundamentally different conception of the child from McCormick, and therefore gives a very different interpretation to this standard for valid proxy consent. In Ramsey's view, McCormick's basic mistake is to think of the child as a small adult, thereby overlooking the child's peculiar vulnerabilities and needs. In particular, McCormick fails to attend to the child's needs for "preservation in life and healthful growth". In this paper, the author pursues Ramsey's suggestion that a correct analysis of valid proxy consent for children would replace the "language of consent" with the "language of need". He does this by sketching a theory of parenthood that rests on two central notions: that of primary goods, as found in the writing of John Rawls, and that of autonomy.

The maxim “parents should do what is in the best interests of their child” seems like an unassailable truth, and yet, as I argue here, there are serious problems with it when it is taken seriously. One problem concerns the sort of demands such a principle places on parents; the other concerns its larger social implications when conceived as part of a national policy for the rearing of children. The theory of parenting that creates these problems I call “optimizing parentalism.” To avoid them, I define and defend a new and more morally appealing theory, “satisficing parentalism.”

As medical technology becomes more sophisticate the ability to manipulate nature and manage disease forces the dilemma of when can becomes ought. Indeed, most bioethical discourse is framed in terms of balancing the values and interests and the benefits and burdens that inform principled decisions about how, when, and whether interventions should occur. Yet, despite advances in science and technology, one caregiver mandate remains as constant and compelling as it was for the earliest shaman—the relief of pain. Even when cure is impossible, the physician's duty of care includes palliation. Moreover, the centrality of this obligation is both unquestioned and universal, transcending time and cultural boundaries.Although universally acknowledged, pain is a complex phenomenon for both the patient and the caregiver, influenced as much by personal values and cultural traditions as by physiological injury and disease.