How should medical services be distributed within society? Who should pay for them? Is it right that large amounts should be spent on sophisticated technology and expensive operations, or would the resources be better employed in, for instance, less costly preventive measures? These and others are the questions addreses in this book. Norman Daniels examines some of the dilemmas thrown up by conflicting demands for medical attention, and goes on to advance a theory of justice in the distribution of health (...) care. The central argument is that health care, both preventive and acute, has a crucial effect on equality of opportunity, and that a principle guaranteeing equality of opportunity must underly the distribution of health-care services. Access to care, preventive measures, treatment of the elderly, and the obligations of doctors and medical administrations are fully discussed, and the theory is shown to underwrite various practical policies in the area. (shrink)

"The subject of this book is the gradual social transformation of deviance designations in American society from "badness" to "sickness." This has been the most profound change in the definition of deviance in the past two centuries. By examining the medicalization (and demedicalization) of deviance in American society, we may also investigate the general sociohistorical process of defining deviance. Thus this book has a dual focus: it is a historical and sociological inquiry into the changing definitions of deviance and an (...) analysis of the transformation from religious and criminal to medical designations and control of deviance."--Preface. (shrink)

In this paper, I explore the “expressivist critique” of the use of prenatal testing to select against the birth of persons with impairments. I begin by setting out the expressivist critique and then highlighting, through an investigation of an influential objection to this critique, the ways in which both critics and proponents of the use of technologies of genetic selection negotiate a difficult set of dilemmas surrounding the relationship between genes and identity. I suggest that we may be able to (...) advance the debate about these technologies by becoming more aware of the ways in which this debate is itself in part a political contestation over this relationship. Ultimately, I will argue, the real force of the expressivist objection lies in its capacity to draw our attention to political questions about the role of the state and about relationships between different social groups rather than between parents and prospective children. That is to say, crucial issues, when evaluating the force of this criticism, turn out to be: the nature of the institutions which determine how decisions about prenatal selection are made; and how we think of each other, that is, what we take to be the defining characteristics of human beings. Paradoxically, arguments about the ethics of the “sorting society”, both supportive and critical, are an important arena in which these institutions and these ideas about identity are contested and shaped. An increased awareness of the reflexive nature of the process of debating these issues may assist us in better negotiating them. (shrink)

Beginning with the assumptions that genetic technology will make possible the enhancement of some significant human capacities and that our society will have self-evident reasons to pursue such enhancements, this essay suggests less evident reasons to proceed with extreme caution. The essay asks: Will we, in our attempts to enhance humans by reducing their subjection to chance and change, inadvertently impoverish them? It explores how technologies aimed at enhancement might affect the good that is our experience of some forms of (...) the beautiful and the excellent, the good that is relationships of care, and the good that is diversity across the life span. In the end, it speculates about the fundamental philosophical difference that underlies the disagreement between those who would tend to embrace a project to enhance human capacities and those who would tend to criticize such a project. (shrink)

The use of cochlear implants, especially for prelingually deafened children, has aroused heated debate. Members and proponents of Deaf culture vigorously oppose implants both as a seriously invasive treatment of dubious efficacy and as a threat to Deaf culture. Some find these arguments persuasive; others do not. And in this context arise questions about the extent to which individuals with disabilities may decline treatments to ameliorate disabling conditions. When they do so, to what extent may they call upon society to (...) provide supportive services and accommodations? (shrink)

In theory, cochlear implants hold out the possibility of enabling profoundly prelingually deaf children to hear. For these children's parents, who are usually hearing, this possibility is a great relief. Yet the decision to have this prosthetic device implanted ought not to be viewed as an easy or obvious one. Implant efficacy is modest and the burdens associated with them can be great. Moreover, the decision to forgo cochlear implantation for one's child, far from condemning her to a world of (...) meaningless silence, opens the child up to membership in the Deaf community, which has a rich history, language, and value system of its own. (shrink)

: This paper examines ethical issues related to medical practices with children and adults who are members of a linguistic and cultural minority known as the DEAF-WORLD. Members of that culture characteristically have hearing parents and are treated by hearing professionals whose values, particularly concerning language, speech, and hearing, are typically quite different from their own. That disparity has long fueled a debate on several ethical issues, most recently the merits of cochlear implant surgery for DEAF children. We explore whether (...) that surgery would be ethical if implants could deliver close to normal hearing for most implanted children, thereby diminishing the ranks of the DEAF-WORLD. The ethical implications of eugenic practices with the DEAF are explored, as are ethical quandaries in parental surrogacy for DEAF children, and their parallels in transracial adoption. (shrink)

Couples should not be allowed to select either for or against deafnessRecently, a US couple deliberately attempted to ensure the birth of a deaf child via artificial insemination.1 In opposing this action, I wish to focus on one argument they employ to support it, namely that in trying to have a deaf child, the women see themselves as no different from parents trying to have a girl. Girls can be discriminated against the same as deaf people and “black people have (...) harder lives”, one of them argues. They compare themselves to a minority group.2In using this argument to justify their attempt to secure the birth of a deaf child, they make four claims: It is not wrong to deliberately try to have a child who is expected to experience harm when the harms the child will experience are socially imposed. As a group experiencing socially imposed harms, the deaf are to be understood as a minority group. Women and people of colour also experience social harms, and are to be understood as minority groups. Because the deaf, women, and people of colour are all groups experiencing socially imposed harms, distinctions should not be made between attempts to have a child who will be a member of one of these groups.In reply, I will advance two arguments. First, I will argue that this couple’s decision is inherently just. Here I will acknowledge that this couple’s position draws a great deal of strength from its appeal to the experiences of women. My second argument will contend, however, that despite the reasonableness of this choice, the intentional selection of deaf children is indefensible. Granting this couple’s contestable assertion that the deaf ought to be understood as a minority cultural group, allowing individuals to secure the birth of deaf …. (shrink)

The cochlear implant controversy involves questions about the nature of disability and the definition of “normal” bodies; it also raises arguments about the nature and significance of culture and the rights of minority cultures. I defend the claim that there might be such a thing as “Deaf culture” and then examine how two different understandings of the role of culture in the lives of individuals can lead to different conclusions about the rights of Deaf parents in relation to their children, (...) and about the ethics of public funding for research on cochlear implants. An argument asserting the rights of minority cultures to equal respect and consideration within a multicultural society, informed by communitarian political philosophy, offers the best prospect for the defence of the unique culture(s) of the Deaf. (shrink)

I distinguish and assess three separate arguments utilized by the opponents of cochlear implants: that treating deafness as a medical condition is inappropriate since it is not a disability; that so treating it sends a message to the Deaf that they are of lesser worth; and that the use of such implants would signal the end of Deaf culture. I give some qualified support to the first and second claim, but find that the principal weight of the argument must be (...) borne by the third argument: that use of the cochlear implants is impermissible because Deaf culture is intrinsically valuable. I show that this claim is, in practice, incompatible with the claim that deafness is not a disability: that the significant disadvantages suffered by the hearing impaired can only be corrected by measures that would end Deaf culture. Since the potential recipients of cochlear implants are, in the main, the prelingually deaf children of hearing parents, the burden of banning the implants would be borne by people who are not members of Deaf culture, and who owe that culture nothing over and above what we all owe cultures in general. I conclude that we cannot ask the parents of these children to sacrifice the interests of their children for the sake of Deaf culture. (shrink)

This paper argues that the medical conception of health as absence of disease is a value-free theoretical notion. Its main elements are biological function and statistical normality, in contrast to various other ideas prominent in the literature on health. Apart from universal environmental injuries, diseases are internal states that depress a functional ability below species-typical levels. Health as freedom from disease is then statistical normality of function, i.e., the ability to perform all typical physiological functions with at least typical efficiency. (...) This conception of health is as value-free as statements of biological function. The view that health is essentially value-laden, held by most writers on the topic, seems to have one of two sources: an assumption that health judgments must be practical judgments about the treatment of patients, or a commitment to "positive" health beyond the absence of disease. I suggest that the assumption is mistaken, the commitment possibly misdescribed. (shrink)

We should react to deaf parents who choose to have a deaf child with compassion not condemnationThere has been a great deal of discussion during the past few years of the potential biotechnology offers to us to choose to have only perfect babies, and of the implications that might have, for instance for the disabled. What few people foresaw is that these same technologies could be deliberately used to ensure that children would be born with disabilities. That this is a (...) real possibility, and not merely the thought experiment of a philosopher, is brought home to us by the decision of an American lesbian couple to select a deaf sperm donor in order to maximise the chances that their children, Jehanne and Gauvin, would be deaf like them.1 Their choice has sparked controversy, not only among medical ethicists, but in the opinion pages of newspapers across the world. Ought parents be permitted to make such choices?If the parents of Jehanne and Gauvin have done anything wrong, it must consist in violating their child’s right to an open future—limiting its future potential for choice.2 But what does it mean to respect this right?From the moment a child is born, her parents are making choices for her, which will powerfully shape her future. They will decide what kind of education she will have, what religious experiences, from among what group she can select friends. Thereby, they profoundly mould the person she will be and the life she will have.When this activity is carried out within certain, ill-defined, limits, it is in no way objectionable. It is not merely a …. (shrink)

Increasingly, Deaf activists claim that it can be good to be Deaf. Still, much of the hearing world remains unconvinced, and continues to think of deafness in negative terms. I examine this debate and argue that to determine whether it can be good to be deaf it is necessary to examine each claimed advantage or disadvantage of being deaf, and then to make an overall judgment regarding the net cost or benefit. On the basis of such a survey I conclude (...) that being deaf may plausibly be a good thing for some deaf people but not for others. (shrink)

The author argues that the free society should not be seen as a hierarchy of superior and subordinate authorities but an archipelago of competing and overlapping jurisdictions. Kukathas has produced the book that no one with an interest in multiculturalism can afford to ignore.

My critics in this symposium illustrate one principle and three fallacies of disability studies. The principle, which we all share, is that all persons are equal and none are less equal than others. No disability, however slight, nor however severe, implies lesser moral, political or ethical status, worth or value. This is a version of the principle of equality. The three fallacies exhibited by some or all of my critics are the following: Choosing to repair damage or dysfunction or to (...) enhance function, implies either that the previous state is intolerable or that the person in that state is of lesser value or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold. Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, violates the principle or equality. It does not. Disability or impairment must be defined relative either to normalcy, “normal species functioning”, or “species typical functioning”. It is not necessarily so defined. (shrink)