In this paper, we offer a new account of disability. According to our account, some state of a person's biology or psychology is a disability if that state makes it more likely that a person's life will get worse, in terms of his or her own wellbeing, in a given set of social and environmental circumstances. Unlike the medical model of disability, our welfarist approach does not tie disability to deviation from normal species’ functioning, nor does it understand disability in (...) essentialist terms. Like the social model of disability, the welfarist approach sees disability as a harmful state that results from the interaction between a person's biology and psychology and his or her surrounding environment. However, unlike the social model, it denies that the harm associated with disability is entirely due to social prejudice or injustice. In this paper, we outline and clarify the welfarist approach, answer common objections and illustrate its usefulness in addressing a range of difficult ethical questions involving disability. (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)

Although most people believe that it is morally wrong to intentionally create children who have an impairment, it is widely held that we cannot criticize such procreative choices unless we find a solution to Parfit’s non-identity problem. I argue that we can. Jonathan Glover has recently argued that, in certain circumstances, such choices would be self-defeating even if morally permissible. I argue that although the scope of Glover’s argument is too limited, it nevertheless directs attention to a moral defect in (...) the attitudes that could motivate such procreative choices, attitudes that, properly characterized, turn out to be person-affecting in character. I conclude by arguing that prospective parents who want to create a child with an impairment face a dilemma. If they want to avoid the charge that their aim is morally defective, they must deny that the desired impairment is harmful. But this would commit them to endorsing the controversial claim that it is morally permissible or even required to turn normal children into impaired ones. (shrink)

Body Integrity Identity Disorder (BIID) is a very rare condition describing those with an intense desire or need to move from a state of ability to relative impairment, typically through the amputation of one or more limbs. In this paper, I draw upon research in critical disability studies and philosophy of disability to critique arguments based upon the principle of nonmaleficence against such surgery. I demonstrate how the action-relative concept of harm in such arguments relies upon suspect notions of biological (...) and statistical normality, and I contend that each fail to provide normative guidance. I then propose a critical theory of harm, one marked by substantive engagement with both empirical and reflective inquiry across the sciences, social sciences, and humanities. I conclude by discussing the implications of this theory and how it might enrich ongoing debates in bioethics, philosophy of disability, and the health humanities. (shrink)

In 2008 the Human Fertilisation and Embryology Act amendments made deliberately choosing to bring disability into the world, using assisted reproduction, a criminal offence. This paper considers whether the legal prohibition above, should influence other policy areas concerning the welfare of future children such as new possibilities presented by foetal surgery and in utero gene therapy. If we have legal duties to avoid disability in one context should this influence our avoidance of disability in this other context? This paper investigates (...) whether the State might have a stake in wider promotion of practices to reduce the degree of disability in foetuses that will come to exist. Not selecting for disability does not affect the welfare of any future individual, whereas treating in utero abnormalities can optimize the eventual child’s welfare; antenatal interventions stand to improve clinical outcomes and welfare should that specific child be born. I explore why the State may want to intervene in the antenatal setting and to what extent, if at all; the State should implement these technologies. I argue that if the State is justified in intervening to outlaw the choosing to create disabled lives using assisted reproductive techniques, it is also justified in putting pressure on prospective parents to accept therapies in utero to help their child be born less disabled. However, I qualify this with the argument that the State is not justified in using force or the criminal law in this situation during pregnancy. (shrink)

One prominent argument against the use of preimplantation genetic diagnosis to select a deaf embryo with the aim of creating a deaf child is that it violates the child’s right to an open future. This paper challenges the open future argument against deaf embryo selection, criticizing its major premise that deafness limits a child’s opportunity range in ways that compromise their future autonomy. I argue that this premise is not justified and is supported by negative presumptions about deaf embodiments that (...) are suspect and in need of further argumentation. First, available interpretations of the open future concept fail to justify the devaluation of deaf traits as inherently autonomy-diminishing. Second, arguing against deaf embryo selection requires demonstrating that a deaf trait generally constrains opportunity ranges independent of social context. But such analyses neglect important social and relational components of autonomy. For these reasons, merely appealing to the child’s right to an open future does not sufficiently support the conclusion that deaf embryo selection is wrong. (shrink)

In recent years, the question of whether prospective parents might have a moral obligation to select against disability in their offspring has piqued the attention of many prominent philosophers and bioethicists, and a large literature has emerged surrounding this question. Rather than looking to the most common arguments given in support of a positive response to the abovementioned question, such as those focusing on the harms disability may impose on the child created, duties and role-specific obligations, and impersonal ‘harms’, a (...) less commonly made set of arguments is focused upon which looks to the harms that a decision not to select against disability may impose on others. Three different possible arguments supporting a limited duty of disability avoidance are thus identified and subsequently explored: harms to parents themselves, harms to existing family members, and harms to other existing members of society. (shrink)

This paper analyzes the underlying tendencies and attitudes toward reproductive medicine borrowing the Nietzschean concepts of nihilism: “death of God” with secularization; “will to power” with reproductive liberty and technological power; and the race of “supermen” with transhumanism. Medical science has advanced in leaps and bounds. In some way, technical innovations have given us unprecedented power to manipulate the way we reproduce. The indiscriminant use of medical technology is backed by a warped notion of human freedom. With secularization in the (...) West, freedom has taken on greater significance in society, but with a heavy emphasis on individual choices and rights. As technology joins forces with sexual liberty, it is not difficult to understand why the public accepts the latest novelty from the reproductive industry. As a result, many find Catholic teaching behind the times and incomprehensible, if not downright anti-scientific. In fact, this coupling of reproductive liberty (will) with reproductive technology (power) echoes the famous dictum “will to power” Nietzsche predicted would characterize post-modern societies. When liberty becomes absolute and technology unchecked, transhumanism is the logical outcome. As a response to these nihilistic tendencies, the paper will end with a critique drawing from theological insights. (shrink)

It has been argued by some authors that our reaction to deaf parents who choose deafness for their children ought to be compassion, not condemnation. Although I agree with the reasoning proposed I suggest that this practice could be regarded as unethical. In this article, I shall use the term “dysgenic” as a culturally imposed genetic selection not to achieve any improvement of the human person but to select genetic traits that are commonly accepted as a disabling condition by the (...) majority of the social matrix; in short as a handicap. As in eugenics, dysgenics can be achieved in a positive and a negative way. Positive dysgenics intends to increase the overall number of people with a particular genetic trait. Marriage between deaf people or conceiving deaf children through reproductive technology are examples of positive dysgenics. Negative dysgenics can be obtained through careful prenatal or pre-implantation selection and abortion (or discarding) of normal embryos and foetuses. Only deaf children would be allowed to live. If dysgenics is seen as a programmed genetic intervention that undesirably shapes the human condition – like deliberately creating deaf or dwarf people – the professionals involved in reproductive technologies should answer the question if this should be an accepted ethical practice because the basic human right to an open future is violated. (shrink)

This paper scrutinizes the tension between individuals’ rights and paternalism. I will argue that no normative account that includes rights of individuals can justify hard paternalism since the infringement of a right can only be justified with the right or interest of another person, which is never the case in hard paternalism. Justifications of hard paternalistic actions generally include a deviation from the very idea of having rights. The paper first introduces Tom Beauchamp as the most famous contemporary hard paternalist (...) by outlining his moral theory (principlism) and showing why it, as it stands, has to allow for hard paternalism. Secondly, the paper focuses on the notion of rights within principlism. I will employ traditional theories of rights to make sense of rights in principlism. Unfortunately, this attempt fails. In the third part, then, I claim that rights can only be limited with reference to the rights or interests of others. This structure is the very point of rights, it is their bite. I will argue for this claim and show its implications. The most important implication is that not only principlism, but every normative theory that includes rights of individuals, has to abolish hard paternalism. (shrink)

Emerging technologies are increasingly used in an attempt to “enhance the human body and/or mind” beyond the contemporary standards that characterize human beings. Yet, such standards are deeply controversial and it is not an easy task to determine whether the application of a given technology to an individual and its outcome can be defined as a human enhancement or not. Despite much debate on its potential or actual ethical and social impacts, human enhancement is not subject to any consensual definition. (...) This paper proposes a timely and much needed examination of the various definitions found in the literature. We classify these definitions into four main categories: the implicit approach, the therapy-enhancement distinction, the improvement of general human capacities and the increase of well-being. After commenting on these different approaches and their limitations, we propose a definition of human enhancement that focuses on individual perceptions. While acknowledging that a definition that mainly depends on personal and subjective individual perceptions raises many challenges, we suggest that a comprehensive approach to define human enhancement could constitute a useful premise to appropriately address the complexity of the ethical and social issues it generates. (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)

abstract In this paper we question the basis on which judgements are made about the ‘quality’ of the lives of people whose embodied experience is anomalous, specifically in cases of impairments. In moral and political philosophy it is often assumed that, suitably informed, we can overcome epistemic gaps through the exercise of moral imagination: ‘putting ourselves in the place of others’, we can share their points of view. Drawing on phenomenology and theories of embodied cognition, and on empirical studies, we (...) suggest that there are barriers to imagining oneself differently situated, or imagining being another person, arising in part from the way imagination is constrained by embodied experience. We argue that the role of imagination in moral engagement with others is to expand the scope of our sympathies rather than to enable us to put ourselves in the other's place. We argue for explicit acknowledgement that our assessments of others’ QOL are likely to be shaped by the specifics of our own embodiment, and by the assumptions we make as a consequence about what is necessary for a good quality of life. (shrink)

Susan has been profoundly deaf since childhood. She is a hearing aid wearer, and likes to use the induction loops built into some public spaces, such as theaters and cinemas, to help cut down the background noise that can make hearing speech very difficult. But this depends on the building having an induction loop fitted and properly maintained. Like many other induction loop users, Susan frequently finds that the advertised loop system is either working poorly or not working at all. (...) Almost as often, she then has the experience of making a complaint about it only to have the problem denied. If she persists, she is often then met... (shrink)

This essay evaluates the moral logic of ‘liberal eugenics’: the ideal of genetic control which leaves decisions about what sort of people to produce in the hands of individual parents, absent government intervention. I argue that liberal eugenics cannot be justified on the basis of the underlying liberal theory which inspires it. I introduce an alternative to Rawls's social primary goods that might be called natural primary goods: hereditable mental and physical capacities and dispositions that are valued across a range (...) of projects and pursuits. I suggest that reproductive genetic biotechnologies like embryo selection, cellular surgery, and genetic engineering, which aim to enhance ‘general purpose’ traits in offspring are less like childrearing practices a liberal government leaves to the discretion of parents than like practices the state makes compulsory. I argue that if the liberal commitment to autonomy is important enough for the state to mandate childrearing practices such as health care and basic education, that very same interest is important enough for the state to mandate safe, effective, and functionally integrated genetic practices that act on analogous all‐purpose traits such as resistance to disease and general cognitive functioning. I conclude that the liberal case for compulsory eugenics is a reductio against liberal theory. (shrink)

Objective: To analyse legislation and medical professionals’ position concerning the doctor’s role in assisted reproduction techniques in Italy, and to discuss the implications for physicians of preimplantation genetic diagnosis .Background: Until recently a strict interpretation of the assisted reproduction law and the guidelines subsequently issued, lead to denying infertile couples affected by genetic diseases the right to resort to PGD. In October 2006 the Constitutional Court ruled regarding the question of the constitutional legitimacy of the prohibition of PGD.Discussion: The Constitutional (...) Court declared the manifest inadmissibility of the question of the constitutional legitimacy of article 13 of law 40/2004. The debate has become very animated since the ruling. After the negative sentence of the Constitutional Court, three further sentences recognised the right of couples to obtain PGD, representing a hard blow to law 40/2004 and to the ministerial guidelines; a further confirmation of the untenability of a law that violates fundamental principles such as the right to healthcare for women and the unborn child, the right to responsible motherhood and to informed consent.Conclusion: It seems that in Italy the legislative inadequacy for medically assisted procreation is reprieved by the courageous decisions of the judges, which refer to the values of the Italian Constitution, in defence of the fundamental rights of the citizens. (shrink)

This paper suggests the adoption of a ‘capability approach’ to key concepts in healthcare. Recent developments in theoretical approaches to concepts such as ‘health’ and ‘disease’ are discussed, and a trend identified of thinking of health as a matter of having the capability to cope with life’s demands. This approach is contrasted with the WHO definition of health and Boorse’s biostatistical account. We outline the ‘capability approach’, which has become standard in development ethics and economics, and show how existing work (...) in those areas can profitably be adapted to healthcare. Cases are used to illustrate the value of adopting a capability approach. (shrink)

Professor Robertson sketches an elegant framework for policy evaluation and regulation of the use of preimplantation genetic diagnosis for various medical, medical related, and non-medical purposes. In criticism of his position, I argue that the distinction between policy and ethics upon which his argument relies is highly unstable, and the approach taken to ethical evaluation of particular parental interests leaves open many issues which the policy approach would hope to exclude. In conclusion I argue that while his position ultimately fails, (...) the onus is on his critics to come up with a viable and satisfying alternative. (shrink)