Projects of human improvement take both individual and intergenerational forms. The biosciences provide many technologies, including prenatal screening and the latest gene editing techniques, such as CRISPR, that have been viewed as providing the means to human improvement across generations. But who is fit to furnish the next generation? Historically, eugenics epitomizes the science-based attempt to improve human society through distinguishing kinds of people and then implementing social policies—from immigration restriction to sexual sterilization and euthanasia—that influence and even direct what (...) sorts of people populate our future. Despite recognition of the horrors of the eugenic extremes of the past and of the subhumanizing of those sufficiently below appearance or ability norms to be viewed as “defective” or “unfit”, many people continue to be drawn to strands of eugenic thinking. (shrink)

ZusammenfassungWie ist die Auswahl zukünftiger Kinder in moralischer Hinsicht zu beurteilen? Der Beitrag untersucht diese Frage auf der Basis eines liberalen Prinzips der reproduktiven Freiheit, welches Handlungsspielräume und Privatsphäre in Fragen der Fortpflanzung verteidigt, wenn nicht gewichtige moralische Gründe aufgezeigt werden können, welche den Handlungen der beteiligten Personen Grenzen setzen. Er beschränkt sich auf die negative Auswahl, d. h. die Auswahl von gesunden Kindern anstelle von zukünftigen Kindern mit Behinderung oder gesundheitlicher Beeinträchtigung. Erörtert werden selektionsbefürwortende Überlegungen, welche das Wohlergehen des (...) zukünftigen Kindes in den Fokus rücken, und zwei grundsätzlich selektionskritische Argumente. Das erste verweist auf parentale Tugenden, welche mit der Auswahl zukünftiger Kinder unvereinbar wären. Bei dem zweiten handelt es sich um den Einwand der Diskriminierung von Menschen mit Behinderung. Das Ergebnis der Diskussion ist, dass es zukünftigen Eltern in den meisten Fällen freisteht, die Entscheidung über die Auswahl ihrer Kinder im Licht ihrer Ziele und Werte zu treffen. (shrink)

Disability activists influenced by queer theory and advocates of “human enhancement” have each disputed the idea that what is “normal” is normatively significant, which currently plays a key role in the regulation of pre-implantation genetic diagnosis (PGD). Previously, I have argued that the only way to avoid the implication that parents have strong reasons to select children of one sex (most plausibly, female) over the other is to affirm the moral significance of sexually dimorphic human biological norms. After outlining the (...) logic that generates this conclusion, I investigate the extent to which it might also facilitate an alternative, progressive, opening up of the notion of the normal and of the criteria against which we should evaluate the relative merits of different forms of embodiment. This paper therefore investigates the implications of ideas derived from queer theory for the future of PGD and of PGD for the future of queerness. (shrink)

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis . This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in (...) the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals. (shrink)

This article discusses the ethics of the use of preimplantation genetic diagnosis to prevent the birth of children with intersex conditions/disorders of sex development , such as congenital adrenal hyperplasia and androgen insensitivity syndrome . While pediatric surgeries performed on children with ambiguous genitalia have been the topic of intense bioethical controversy, there has been almost no discussion to date of the ethics of the use of PGD to reduce the prevalence of these conditions. I suggest that PGD for those (...) conditions that involve serious medical risks for those born with them is morally permissible and that PGD for other “cosmetic” variations in sexual anatomy is more defensible than might first appear. However, importantly, the arguments that establish the latter claim have radical and disturbing implications for our attitude toward diversity more generally. (shrink)

The morality of abortion is a longstanding controversy. One may wonder whether it’s even possible to make significant progress on an issue over which so much ink has already been split and there is such polarizing disagreement (Boyle 1994). The papers in this issue show that this progress is possible—there is more to be said about abortion and other crucial beginning-of-life issues. They do so largely by applying contemporary philosophical tools to moral questions involving life’s beginning. The first two papers (...) defend the pro-life view from recent objections involving miscarriage and abortion doctors. The third shows how the social model of disability and the concept of transformative experience applies to classic debates like abortion and euthanasia. The final two papers address how rights and harms apply to children and to beings that do not yet exist. All five papers make a noteworthy contribution to the moral issues that arise at the beginning of life. (shrink)

In this paper I take up a critical position in regard to the theme of debility around which this collection is framed. I argue that theorisations of ‘debility’ do little to progress theory and policy in regard to disability and share many of the problems inherent to the social model. I also suggest that the theorisation of debility is rooted in and reinforces ablebodied privilege. I begin with a critical analysis of the social model of disability and explore the dualisms (...) by which it either negates the body altogether or can only conceive the disabled body in negative terms. I then go on to explore how Puar's work on debility continues this negation of the disabled body. From this position I use the work of Inahara to excavate the foundations of ablebodied privilege. In Inahara's work gender is the analytic starting point, but for me white privilege is a much more effective mechanism through which to understand the impact and reproduction of ablebodied privilege— what McRuer refers to as ‘compulsory ablebodiedness'—which I argue underpins Puar's work. I conclude with some reflections upon how a critical analysis of ablebodied privilege might function and I reiterate its importance for a critical theory that goes beyond the mere repetition of binary structures of ablebodiedness and disability. (shrink)

This article offers the critical concept misfit in an effort to further think through the lived identity and experience of disability as it is situated in place and time. The idea of a misfit and the situation of misfitting that I offer here elaborate a materialist feminist understanding of disability by extending a consideration of how the particularities of embodiment interact with the environment in its broadest sense, to include both its spatial and temporal aspects. The interrelated dynamics of fitting (...) and misfitting constitute a particular aspect of world-making involved in material-discursive becoming. The essay makes three arguments: the concept of misfit emphasizes the particularity of varying lived embodiments and avoids a theoretical generic disabled body; the concept of misfit clarifies the current feminist critical conversation about universal vulnerability and dependence; the concept of misfitting as a shifting spatial and perpetually temporal relationship confers agency and value on disabled subjects. (shrink)

A crucial challenge for critical disability studies is developing an argument for why disabled people should inhabit our democratic, shared public sphere. The ideological and material separation of citizens into worthy and unworthy based on physiological variations imagined as immutable differences is what I call eugenic world building. It is justified by the idea that social improvement and freedom of choice require eliminating devalued human traits in the interest of reducing human suffering, increasing life quality, and building a more desirable (...) citizenry. In this essay, I outline the logic of inclusive and eugenic world building, define and explain the role of the "normate" in eugenic logic, and provide a critical disability studies reading of the 2005 novel Never Let Me Go by Kazuo Ishiguro and its 2010 film adaptation. I argue that the ways of being in the world we think of as disabilities must be understood as the natural variations, abilities, and limitations inherent in human embodiment. When this happens, disability will be understood not as a problem to be eliminated but, rather, as a valid way of being in the world that must be accommodated through a sustaining and sustainable environment designed to afford access for a wide range of human variations. (shrink)

Dignity may just be the most promiscuous normative abstraction. This article, informed by dignity’s historical variability, political theoretic multipurpose, and conflicting jurisprudence, focuses on a particular but influential invocation of the term: dignity as the normative ground for the ‘capabilities approach’ model of social justice. We ask whether or not the CA, in particular the influential version propounded by philosopher Martha Nussbaum, requires dignity as its foundational premise, and whether or not dignity may be more costly than beneficial for the (...) CA’s vision of a minimally just society. The first section of this article rehearses the warrants of and criticisms against the dignity-basis of Nussbaum’s CA. We canvass the relatively sparse scholarship on dignity within the CA to situate our contribution. The next two sections are case studies, demonstrating dignity’s shortcomings for assessing and regulating sex and abortion, respectively. The fourth section rebuts two possible objections to our criticisms of dignity. The fifth and final section gestures toward another normative abstraction, ‘minimum conditions of individuation’, less polysemic than dignity, which might alternatively ground the CA. (shrink)

In the polarized debates about abortion and voluntary euthanasia, disability advocates, who normally align with left-wing social forces, have tended to side with conservative and religious voices in expressing concerns about the impact of technological and sociopolitical developments on disabled futures. This paper draws on the social model of disability and the virtue ethics tradition to explain the alignment between the religious and disability perspectives, and the theory of transformative choice to highlight the limits and biases of the pro-choice logic. (...) Yet, it also recognizes the inherent contradiction of disabled advocates taking a paternalistic position against the personal agency of women and people facing terminal illnesses. A disability perspective serves the discussion of abortion and euthanasia as an encouragement to work together for the building of a society that enables people with diverse disabilities to exist and flourish, and helps pregnant women, people facing disabling and terminal illnesses, and politicians and social influencers to make informed choices. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (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)

Eugenics is commonly thought of as having endured as science and social movement only until 1945. With the advance of both reproductive and enhancement technologies, however, concern has arisen that eugenics has resurfaced in new forms. In particular, the eugenic potential of the Human Genome Project led to talk of the rise of ‘newgenics’ and of a backdoor to eugenics. This article focuses on such concerns deriving from the practice of prenatal screening and technologies that increase our ability to generate (...) information about the kinds of children we are likely to have. Given individual preferences and social norms concerning what traits are intergenerationally desirable, how should we act and what practices and policies should we endorse or scrutinise? This article will concentrate on key components of eugenic thinking present today and emphasise continuities between the eugenic past and new- genic present in the subhumanisation of people with cognitive or intellectual disabilities. (shrink)

Annotated bibliography on eugenics and philosophy.