It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, though we cannot (...) make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (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)

Some philosophers and disability advocates argue that disability is not bad for you. Rather than treated as a harm, it should be considered and even celebrated as just another manifestation of human diversity. Disability is mere difference. To most of us, these are extraordinary claims. Can they be defended?

This paper examines the impact of disability on wellbeing and presents arguments against the mere-difference view of disability. According to the mere-difference view, disability does not by itself make disabled people worse off on balance. Rather, if disability has a negative impact on wellbeing overall, this is only so because society is not treating disabled people the way it ought to treat them. In objection to the mere-difference view, it has been argued, roughly, that the view licenses the permissibility of (...) causing disability and the impermissibility of causing nondisability. In her recent article, “Valuing Disability, Causing Disability”, Elizabeth Barnes attempts to show that this causation-based objection does not succeed. We disagree and argue why. We begin by explaining that in order to defeat the causation-based objection it does not suffice to show that it is not always true that the mere-difference view licenses causing disability. Rather, license in some cases, in a way that undermines the plausibility of the mere-difference view, would be sufficient for the causation-based objection to succeed. Then our discussion turns to an important challenge for proponents of the causation-based objection: Some defenders of the mere-difference view are prepared to simply accept the counterintuitive implications of their position. A dialogue with such proponents of the mere-difference view requires arguments with independent traction. We present several such arguments to the effect that the mere-difference view needs to be significantly reduced in scope – and may turn out to be false altogether. (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)

In 'Benefit, Disability and the Non-Identity Problem', Hallvard Lillehammer uses the case of a couple who chose to have deaf children to argue against the view that impartial perspectives can provide an exhaustive account of the rightness and wrongness of particular reproductive choices. His conclusion is that the traditional approach to the non-identity problem leads to erroneous conclusions about the morality of creating disabled children. This paper will show that Lillehammer underestimates the power of impartial perspectives and exaggerates the ethical (...) force of partial perspectives, which in turn commits him to providing weak justifications for the choice made by the couple in his example case. (shrink)

ABSTRACT As parents become increasingly able to make genetic trait selections on behalf of their children, they will need ethical guidance in deciding what genetic traits to select. Dena Davis has argued that parents act unethically if they make selections that constrain their child's range of futures. But some selections may expand the child's range of futures. And other selections may shift the child's range of futures, without either constraining or expanding that range. I contend that not only would parents (...) act unethically if they make selections that constrain the range of their child's futures, they would act unethically if they make selections that shift the range of their child's futures, because selections that shift the range of the child's futures would allow parents to over‐determine their child's futures. Thus, I contend that parents would act ethically only if they make selections that expand their child's range of futures. (shrink)

We have a reason to use information which is available about such genes in our reproductive decision-making; (3) couples should selec.

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)

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)

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)

It is common to cite the child’s “right to an open future” in discussions of how parents and the state may and should treat children. However, the right to an open future can only be useful in these discussions if we have some method for deriving the content of the right. In the paper in which he introduces the right to an open future Joel Feinberg seems to provide such a method: he derives the right from the content of adult (...) autonomy rights. In this paper I argue that his argument fails. If it is to give us guidance about the content of the child’s right to an open future, then the right should be interpreted as a right to a maximally open future. But this strong interpretation is unjustified: the arguments that can be found in Feinberg in favor of the right are invalid, and, in any case, this interpretation has implausible implications. A moderate interpretation of the right to an open future, according to which children have a right to acquire some reasonable range of skills and options, is more plausible. However, if a moderate interpretation is correct, there is not only no argument in Feinberg to support it, there is also no method for deriving the content of the right. Without such a method we have to bring in other moral considerations in order to work out the limits on parental discretion and what children are owed. The right to an open future then does no normative work. (shrink)

Deontologists have long been upbraided for lacking an account of justified decision- making under risk and uncertainty. One response is to develop a deontological decision theory—a set of necessary and sufficient conditions for an act’s being permissible given an agent’s imperfect information. In this article, I show that deontologists can make more use of regular decision theory than some might have thought, but that we must adapt decision theory to accommodate agent- centered options—permissions to favor or sacrifice our own interests, (...) when doing so is overall morally worse. Accommodating options requires more than just amend- ing the decision-theoretic ‘value function’. We must change the decision rule as well. (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)

Some disability activists argue that disability is merely a difference. It is often objected that this view has unacceptable implications, implying, for example, that it is permissible to cause disability. In reply, Elizabeth Barnes argues that viewing disability as a difference needn’t entail such implications and that seeing such implications as unacceptable is question-begging. We argue that Barnes misconstrues this objection to the mere difference view of disability: it’s not question-begging to regard its implications as unacceptable, and the grounds that (...) Barnes offers for potentially blocking some of these implications fail to explain our conviction that it’s impermissible to cause disability. (shrink)

Does disability make a person worse off? I argue that the best answer is yes AND no, because we can be worse off in two conceptually distinct ways. Disabilities usually make us worse off in one way (typified by facing hassles) but not in the other (typified by facing loneliness). Acknowledging two conceptually distinct ways to be worse off has fundamental implications for philosophical theories of well-being. (This paper won the APA’s Routledge, Taylor & Francis Prize in 2017.).

abstract John Robertson has famously argued that the right to reproductive autonomy is exceedingly broad in scope. That is, as long as a particular reproductive preference such as having a deaf child is “determinative” of the decision to reproduce then such preferences fall under the protective rubric of reproductive autonomy rights. Importantly, the deafness in question does not constitute a harm to the child thereby wrought since unless the child could be born deaf he or she would otherwise never have (...) existed— his or her prospective parents would simply have chosen to abort. As such, for this child, being born deaf counts as a benefit, albeit of the “backhanded” variety, since the only other practical alternative is nonexistence. In what follows, I want to investigate this argument in detail. The target of my investigation will be the possible future use of gene therapy technology to “disenhance” one's offspring. I intend to show that the apparently unlimited right to reproductive autonomy, that is, the right to choose both the quantity and qualities of future offspring, entailed by the argument from backhanded benefit can in fact be “sidestepped” through considering what sorts of reproductive practices we as a society ought to allow. (shrink)

I defend the idea that a liberal commitment to value neutrality is best honoured by maintaining a pure cardinality component in our rankings of opportunity or liberty sets. I consider two challenges to this idea. The first holds that cardinality rankings are unnecessary for neutrality, because what is valuable about a set of liberties from a liberal point of view is not its size but rather its variety. The second holds that pure cardinality metrics are insufficient for neutrality, because liberties (...) cannot be individuated into countable entities without presupposing some relevantly partisan evaluative perspective. I argue that a clear understanding of the liberal basis for valuing liberty shows the way to satisfying responses to both challenges. (shrink)

I argue that we cannot adequately characterize the aims of education in terms of some formal conception of what it is to think well. Implementing any such aim requires reliance on and communication of further, substantive normative commitments. This reveals that a standard contrast between an old-fashioned approach to education that aims to communicate a particular normative outlook, and a progressive approach that aims to develop skills of critical reasoning and reflection is confused and misleading.

Much academic work (in philosophy, economics, law, etc.), as well as common sense, assumes that ill health reduces well-being. It is bad for a person to become sick, injured, disabled, etc. Empirical research, however, shows that people living with health problems report surprisingly high levels of well-being - in some cases as high as the self-reported well-being of healthy people. In this chapter, I explore the relationship between health and well-being. I argue that although we have good reason to believe (...) that health problems causing pain and death typically do reduce well-being, health problems that limit capabilities probably don't reduce well-being nearly as much as most people suppose. I then briefly explore the consequences of this conclusion for political philosophy and ethics. If many health problems don't significantly reduce well-being, why should governments go to great expense to prevent or treat them? Why should parents be obliged to ensure the health of their children? (shrink)