It is hardly news to readers of this collection that in bioethics there has been a long-standing debate between people who can seem to be arguing "for" disability and people who can seem to be arguing "against" it. Those who have argued for have often been disability scholars and those who have argued against have often been philosophers of a utilitarian bent. At least since the mid 2000s, some disability scholars and some philosophers of a utilitarian bent have sought to (...) move beyond that debate, but achieving that aim is harder than it sounds. In this essay, I want to take two... (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

In the helpful article “Why Bioethics Needs a Disability Moral Psychology,” Joseph Stramondo adds to the critique of actually existing bioethics and explains why disability activists and scholars so often find fault with the arguments of bioethicists. He is careful not to stereotype either community—rightly, given that bioethicists endorse positions as disparate as utilitarianism, deontology, virtue ethics, and feminist ethics, among others. Although Stramondo never explicitly mentions utilitarians or liberals, it seems probable that these are the main targets of his (...) discontent. The disability community, as he concedes, is also a broad church. Yet for this reason, I do not believe that you can read off positions on bioethics questions from either disability embodiment or disability organization affiliation. (shrink)

Disability is primarily a social phenomenon -- a way of being a minority, a way of facing social oppression, but not a way of being inherently or intrinsically worse off. This is how disability is understood in the Disability Rights and Disability Pride movements; but there is a massive disconnect with the way disability is typically viewed within analytic philosophy. The idea that disability is not inherently bad or sub-optimal is one that many philosophers treat with open skepticism, and sometimes (...) even with scorn. The goal of this book is to articulate and defend a version of the view of disability that is common in the Disability Rights movement. To be physically disabled is not to have a defective body, but simply to have a minority body. (shrink)

This book, written by four internationally renowned bioethicists and first published in 2000, was the first systematic treatment of the fundamental ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how should these affect our understanding of distributive justice, equality of opportunity, the rights and obligations as parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice. The (...) book offers a historical context to contemporary debate over the use of these technologies by examining the eugenics movement of the late nineteenth and early twentieth centuries. The questions raised in this book will be of interest to any reflective reader concerned about science and society and the rapid development of biotechnology, as well as to professionals in such areas as philosophy, bioethics, medical ethics, health management, law, and political science. (shrink)

Disability rights activists often claim that disability is not—by itself—something that makes disabled people worse off. A popular objection to such a view of disability is this: were it correct, it would make it permissible to cause disability and impermissible to cause nondisability. The aim of this article is to show that these twin objections don’t succeed.

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)

Should parents try to give their children the best lives possible? Yes. Do parents have an obligation to give their children the widest possible set of opportunities in the future? No. Understanding how both of these things can be true will allow us to go a long way towards understanding why a Deaf couple might wish their child to be born Deaf and why we might have reason to respect this desire.

This paper demonstrates that accounting for the moral harm of selecting for deafness is not as simple or obvious as the widespread negative response from the hearing community would suggest. The central questions addressed by the paper are whether our moral disquiet with regard to selecting for deafness can be adequately defended, and if so, what this might entail. The paper considers several different strategies for accounting for the supposed moral harm of selecting for deafness and concludes that the deaf (...) case cannot be treated in isolation. Accounting for the moral harm of selecting for deafness necessarily entails moral implications for other cases of procreation and procreative decision-making, including unassisted coital reproduction. The lesson to be learned from the deaf case is that we need norms that govern not just the use of reproductive technology, but procreation and procreative decision-making in all of its various forms. (shrink)

abstract In this paper I develop a characterization of disability according to which disability is in no way a sub-optimal feature. I argue, however, that this conception of disability is compatible with the idea that having a disability is, at least in a restricted sense, a harm. I then go on to argue that construing disability in this way avoids many of the common objections levelled at accounts which claim that disability is not a negative feature.

Fricker shows that virtue epistemology provides a general epistemological idiom in which these issues can be forcefully discussed.

Better Never to Have Been argues for a number of related, highly provocative, views: (1) Coming into existence is always a serious harm. (2) It is always wrong to have children. (3) It is wrong not to abort fetuses at the earlier stages of gestation. (4) It would be better if, as a result of there being no new people, humanity became extinct. These views may sound unbelievable--but anyone who reads Benatar will be obliged to take them seriously.

According to what we call the Principle of Procreative Beneficence, couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being. In the first part of this paper, we introduce PB, explain its content, grounds, and implications, and defend it against various objections. In the second part, we argue that PB is superior to competing principles of procreative selection such as (...) that of procreative autonomy. In the third part of the paper, we consider the relation between PB and disability. We develop a revisionary account of disability, in which disability is a species of instrumental badness that is context- and person-relative. Although PB instructs us to aim to reduce disability in future children whenever possible, it does not privilege the normal. What matters is not whether future children meet certain biological or statistical norms, but what level of well-being they can be expected to have. (shrink)

Attempts to determine or to select what kind of person or people to bring into existence are controversial. This is particularly true of “negative selection” or “selecting against” a certain type of person—that is, the attempt to prevent a person of a certain type, or people of that type, from existing. Virtually everyone agrees that some instances of negative selection are objectionable—for example, that selection against healthy people would be wrong, particularly if this were combined with positive selection of people (...) with serious diseases. But some people believe that all negative selection is objectionable and therefore that all “selection for existence,” whether positive or negative, is objectionable. For if negative selection is objectionable, it seems to follow that positive selection is as well, since the attempt to bring a person of a certain type into existence is simultaneously an attempt not to bring into existence a person who is not of that type. In short, positive selection is implicitly negative as well. (shrink)

Challenging, with several powerful arguments, some of our deepest beliefs about rationality, morality, and personal identity, Parfit claims that we have a false view about our own nature. It is often rational to act against our own best interersts, he argues, and most of us have moral views that are self-defeating. We often act wrongly, although we know there will be no one with serious grounds for complaint, and when we consider future generations it is very hard to avoid conclusions (...) that most of us will find very disturbing. (shrink)

Like any philosophically interesting health care practice, ethical analysis of Pre-implantation Genetic Diagnosis has produced a wide range of moral positions. For example, one might contrast David King's view that warns PGD should be strictly limited and regulated because it will soon result in the expansion of a troubling "laissez-faire eugenics" with Julian Savulescu's argument for the "principle of procreative beneficence" morally requiring parents to use information attained through PGD to select the "best child". That is, these authors represent two (...) poles of a sort of moral spectrum regarding PGD. At one end, we have a deep suspicion of the technology as directly leading to... (shrink)

These words were written by ethicist Jonathan Glover in his paper “Future People, Disability and Screening” in 1992. Whereas screening and choosing for a disability remained a theoretical possibility 16 years ago, it has now become reality. In 2006, Susannah Baruch and colleagues at John Hopkins University published a survey of 190 American preimplantation genetic diagnosis clinics, and found that 3% reported having the intentional use of PGD “to select an embryo for the presence of a disability.” Even before, in (...) 2002, a controversy was generated by the case of Candace A. McCullough and Sharon M. Duchesneau, a lesbian and deaf couple from Maryland who set out to have a deaf child by intentionally soliciting a deaf sperm donor. (shrink)

In this paper I explore the potential of virtue ethical ideas to generate a new way of thinking about the ethical questions surrounding the creation of children. Applying ideas from neo-Aristotelian virtue ethics to the parental sphere specifically, I develop a framework for the moral assessment of reproductive actions that centres on the concept of parental virtue. I suggest that the character traits of the good parent can be used as a basis for determining the moral permissibility of a particular (...) reproductive action. I posit three parental virtues and argue that we can see the moral status of a reproductive action as determined by the relationship between such an action and (at least) these virtues. Using a case involving selection for deafness, I argue that thinking in terms of the question ‘would a virtuous parent do this?’ when morally assessing reproductive action is a viable and useful way of thinking about issues in reproductive ethics. (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 American Journal of Bioethics, Volume 12, Issue 8, Page 30-31, August 2012.

: 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)

I argue it is inconsistent to believe that overconsumption is wrong or bad yet believe that having children is morally permissible, insofar as they produce comparable environmental impacts, are voluntary choices, and arise from similar desires. This presents a dilemma for "mainstream environmentalists": they do not want to abandon either of those fundamental beliefs, yet must give up one of them. I present an analogical argument supporting that conclusion. After examining four attempts to undermine the analogy, I conclude that none (...) of them successfully locates a significant, relevant difference between procreation and eco-gluttony (roughly, consumption exceeding that of the average American). Thus, in order to be consistent, one must be in favour of both or opposed to both. Mainstream environmentalism, then, is not an option, and should be replaced by radical environmentalism, the view that both overconsumption and (in most cases) having children are morally problematic in an overcrowded world. (shrink)

This chapter contains section titled: A Moral and Developmental Parity of Genes and Environment Manufacturing Humans Enhancement and Bad Parenting The Limited Powers of Genetic Engineers Are Enhancements Problematic because they are Positionally Valuable? Regulating the Pursuit of Positional Value.

If genetic diagnosis and preimplantation selection could be employed to produce deaf children, would it be acceptable for deaf parents to do so? Some say no, because there is no moral difference between selecting a deaf embryo and deafening a hearing child, and because it would be wrong to deafen infants. It is argued in this paper, however, that this view is untenable. There are differences between the two activities, and it is perfectly possible to condone genetic selection for deafness (...) while condemning attempts to deafen infants at birth. (shrink)

The concept of selecting for a disability, and deafness in particular, has triggered a controversial and sometimes acrimonious debate between key stakeholders. Previous studies have concentrated on the views of the deaf and hard of hearing, health professionals and ethicists towards reproductive selection for deafness. This study, however, is the first of its kind examining the views of hearing children of deaf adults towards preimplantation genetic diagnosis and prenatal diagnosis to select for or against deafness. Hearing children of deaf adults (...) straddle both the deaf and hearing worlds, and this dual perspective makes them ideally placed to add to the academic discourse concerning the use of genetic selection for or against deafness. The study incorporated two complementary stages, using initial, semistructured interviews with key informants as a means to guide the subsequent development of an electronic survey, completed anonymously by 66 individuals. The participants shared many of the same views as deaf individuals in the D/deaf community. The similarities extended to their opinions regarding deafness not being a disability, their ambivalence towards having hearing or deaf children and their general disapproval of the use of genetic technologies to select either for or against deafness. (shrink)