Selection against embryos that are predisposed to develop disabilities is one of the less controversial uses of embryo selection technologies. Many bio-conservatives argue that while the use of ESTs to select for non-disease-related traits, such as height and eye-colour, should be banned, their use to avoid disease and disability should be permitted. Nevertheless, there remains significant opposition, particularly from the disability rights movement, to the use of ESTs to select against disability. In this (...) article we examine whether and why the state could be justified in restricting the use of ESTs to select against disability. We first outline the challenge posed by proponents of ‘liberal eugenics’. Liberal eugenicists challenge those who defend restrictions on the use of ESTs to show why the use of these technologies would create a harm of the type and magnitude required to justify coercive measures. We argue that this challenge could be met by adverting to the risk of harms to future persons that would result from a loss of certain forms of cognitive diversity. We suggest that this risk establishes a pro tanto case for restricting selection against some disabilities, including dyslexia and Asperger's syndrome. (shrink)

This essay re-examines the disability critique of prenatal and pre-implantation screening in light of evidence about the larger context in which fertility and reproductive healthcare is rendered in the U.S. It argues that efforts to identify acceptable criteria for trait-based selection or otherwise impose reasons-based limitations on reproductive choice should be avoided because such limitations tend to perpetuate the discrimination encountered by adults with disabilities seeking fertility and reproductive health services.

Disability rights advocates sometimes claim that prenatal tests to select against disabilities discriminate against people with disabilities. The “expressivist argument” that supports this position has been challenged on grounds of the difference between fetuses and born persons. In this essay, I explain why the expressivist argument is valid despite the questionableness of its conclusion, and why the distinction between fetuses and born persons fails to provide an adequate counterargument to the expressivist conclusion. I also consider a compelling (...) argument for prenatal testing to select against disabilities and propose a reformulation of this argument that, I think, supports prenatal testing for disabilities while avoiding discrimination against people born with disabilities. (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)

Sex selection and disability avoidance receive opposed treatment in bioethics literature, legislative practice and public opinion. However, some theorists question this state of affairs by drawing analogies between the harmful consequences of these practices. This paper shares their disapproval of gender selection and disability avoidance, but bases its resistance to these practices on an examination of the concepts of gender and disability. Here it identifies conceptual confusions as another cause of approval of sex selection (...) and disability avoidance. Further, in clarifying the nature of the concepts at issue, and their relationship with the subjects that they apply to, this discussion highlights the existence of relevant analogies between the concepts of gender and disability. Here the social construction and universality of gender and disability allow their differential treatment to be resisted at the conceptual level, creating a strong foundation for more consequentialist arguments against sex selection and disability avoidance. (shrink)

In this paper we challenge the moral consensus against selection for disability. Our discussion will concern only those disabilities that are compatible with a life worth living from the point of view of the disabled individual. We will argue that an influential, impersonal argument against selection for disability falls to a counterexample. We will then show how the reach of the counterexample can be broadened to make trouble for anyone who objects to selection (...) for disability. If we are right about the problems for objections to selection for disability, why are objections are so widespread? We suggest that intuitions are being skewed against selection for disability by certain quirks in the usual ways of presenting the issue. Nevertheless, we must confess to finding our own result surprising. (shrink)

Australia, Canada, and New Zealand currently apply health requirements to prospective immigrants, denying residency to those with health conditions that are likely to impose an “excessive demand” on their publicly funded health and social service programs. In this paper, I investigate the charge that such policies are wrongfully discriminatory against persons with disabilities. I first provide a freedom-based account of the wrongness of discrimination according to which discrimination is wrong when and because it involves disadvantaging people in the exercise (...) of their freedom on the basis of morally arbitrary features of their identity. Discrimination is permissible, I suggest, when it is necessary to advance a valuable exercise of the discriminating agent’s freedom. I then apply this account to the case of social cost health requirements. Against critics of these requirements, I argue that it is sometimes permissible for states to discriminate against prospective immigrants with disabilities. States may do so, I suggest, when such discriminatory treatment is necessary to prevent an increase in rates of mortality and/or morbidity amongst citizens. Alongside critics of social cost health requirements however, I argue that existing policies are likely a form of wrongful discrimination insofar as they are too broad to satisfy this standard. (shrink)

This article analyzes the main reasons offered by the literature in relation to the question of whether pre-implantation genetic diagnosis and selection should be allowed in the context of assisted reproduction techniques to avoid the birth of children with disabilities. The bioethical literature faces a challenge from the disability discourse. When the oppressive social dimension of disability is taken into account, it results in a series of questions that could challenge the most settled conclusions of the bioethical (...) debate. However, the social model has not been without criticism and one of them, the underestimation of the importance of biological traits origin against a disability of social origin, resonates particularly in the debate on preimplantation genetic selection. (shrink)

The disability critique of negative genetic selection is frequently accused of threatening reproductive liberty. This paper describes the disability critique and defends it against that objection. It also contends that the critique can work to deflate belief in genetic determinism. Recognizing the influence of genetic determinism helps advocate for existing persons in the disability community and protects reproductive liberty. The disability critique can point to genetic determinism but does not suggest a ban or obstacles (...) to the choice of negative genetic selection; therefore, it is not antithetical to reproductive liberty, as has been charged. (shrink)

Recent scientific advances in the field of gene editing have led to a renewed discussion on the moral acceptability of human germline modifications. Gene editing methods can be used on human embryos and gametes in order to change DNA sequences that are associated with diseases. Modifying the human germline, however, is currently illegal in many countries but has been suggested as a ‘last resort’ option in some reports. In contrast, preimplantation genetic diagnosis is now a well-established practice within reproductive medicine. (...) Both methods can be used to prevent children from being born with severe genetic diseases. This paper focuses on four moral concerns raised in the debate about germline gene editing and applies them to the practice of PGD for comparison: Violation of human dignity, disrespect of the autonomy and the physical integrity of the future child, discrimination of people living with a disability and the fear of slippery slope towards immoral usage of the technology, e.g. designing children for specific third party interests. Our analysis did not reveal any fundamental differences with regard to the four concerns. We argue that with regard to the four arguments analyzed in this paper germline gene editing should be considered morally as acceptable as the selection of genomes on the basis of PGD. However, we also argue that any application of GGE in reproductive medicine should be put on hold until thorough and comprehensive laws have been implemented to prevent the abuse of GGE for non-medical enhancement. (shrink)

The following is dedicated to promoting a version of the disability critique of negative genetic selection while navigating claims that launching such a critique threatens reproductive liberty or is unavoidably antichoice. I highlight problematic conceptual assumptions regarding genetics and choice made by proponents and opponents of selection alike and bring out the underlying ableist values of the prevailing conversation. Ableism is discrimination against persons on the basis of perceived disability. I conclude that the existing social (...) and institutional milieu surrounding genetic selection threatens persons who experience difference with stigma and its accompanying political and social disadvantages. My .. (shrink)

People with cognitive disabilities and their advocates often express uneasiness about prenatal testing and the selective termination of pregnancies because the fetus has a cognitively disabling condition. There are high rates of abortion in such circumstances, and new forms of noninvasive prenatal testing (NIPT) have been introduced to improve the detection of genetic conditions. This chapter argues that the feeling of disquiet about prenatal testing and selective termination is justified. Philosophers working in the field of bioethics often offer reassurance that (...) such feelings are unjustified. This chapter shows that such reassurances fail and presents an argument that bias against people with cognitive disability plays a role in prenatal decision-making. Feelings of disquiet are justified because it is justified to object to bias that is otherwise directed at oneself. (shrink)

This comment shifts Ouellette's frame of reference in linking prenatal selection against disability, laws prohibiting prenatal sex selection, and fertility specialists' discrimination against disabled adults. Viewing decisions about who can reproduce and what children will be born as fundamentally decisions about family suggests ways to promote acceptance of people with disabilities as valued family members — without limiting reproductive liberties.

This paper argues that, if we are committed to a Pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex-selective abortion (SSA), for two reasons. First, familiar Pro-choice arguments in favour of a woman’s right to select against fetal impairment also support, by parity of reasoning, a right to choose SSA. Second, rejection of the criticisms of selective abortion for disability levelled by disability theorists also disposes, by (...) implication, of the key objections to SSA, as developed, most notably, by feminists. The paper, then, consists of a conditional defence of SSA, under which SSA should be available, and protected by a right, if selective abortion for disability is. Opponents of SSA might respond by conceding additional restrictions on selection against disabled fetuses. It should become clear throughout the paper, however, that any such new restrictions would be unacceptably onerous for women. (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)

Jeremy Williams has argued that if we are committed to a liberal pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex selective abortion. Here, I apply his reasoning to selective abortion based on other traits pregnant women may decide are undesirable. These include susceptibility to disease, level of intelligence, physical appearance, sexual orientation, religious belief and criminality—in fact any traits attributable to some degree to a genetic component. Firstly, I (...) review Williams’ argument, which claims that if a woman is granted the right to abort based on fetal impairment, then by parity of reasoning she should also be granted the right to choose sex selective abortion. I show that these same considerations that entail the permissibility of sex selective abortion are also applicable to genetic selection abortion. I then examine the objections to sex selective abortion that Williams considers and rejects, and show that they also lack force against genetic selection abortion. Finally, I consider some additional objections that might be raised, and conclude that a liberal pro-choice stance on selective abortion for disability entails the permissibility of selective abortion for most genetic traits. (shrink)

This chapter explores some implications of the view that the woman in the rubella case has a reason to defer conception. It considers its implications for the ethics of genetic selection. Genetic selection involves choosing to bring one child into existence rather than another, based in part on the genetic characteristics of the alternative possible children. The chapter argues that potential parents have reason to pursue genetic selection to avoid having a child with a disposition to a (...) wellbeing-reducing disease or disability, a disposition to other wellbeing-reducing traits, and dispositions that tend to reduce the wellbeing of others. It considers several objections that might be raised against genetic selection. Some people would advance these objections only against the more controversial forms of genetic selection mentioned earlier: selection against non-medical traits, and selection for the benefit of third parties. Others would advance these objections even against the least controversial kind of genetic selection: selection to avoid disease or disability. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Disability in the Christian Tradition: A Reader Edited by Brian Brock and John SwintonKevin McCabeDisability in the Christian Tradition: A Reader EDITED BY BRIAN BROCK AND JOHN SWINTON Grand Rapids, MI: Eerdmans, 2012. 576 pp. $45.00Disability in the Christian Tradition makes an important contribution to the growing area of theological inquiry known as “theology of disability.” While questions of physical and intellectual difference are getting much-deserved (...) attention from religious ethicists and constructive theologians today, relatively little attention has been given to the treatment of what we now call “disability” throughout the history of Christian thought and especially in the premodern era. This volume seeks to remedy this situation by highlighting the theological consideration of disability in Christian thinkers from the patristic era to the present. Against tendencies to treat disability as a “special case” for thinking about humanity, this volume seeks to show the often overlooked presence of reflection on disability throughout the tradition.The volume pairs introductory and interpretive essays from contemporary scholars with primary source selections from each historical thinker. Essays on Augustine, Aquinas, and Luther help to correct the historical record, which often remembers these theologians as advocating rationalist or exclusionary anthropologies that marginalize or significantly compromise the humanity of persons with disabilities. These thinkers prove to be more nuanced and insightful than is often thought. However, as Brian Brock points out with respect to Augustine, and as Stefan Heuser points out with respect to Luther, [End Page 238] these figures are often ambivalent or at odds with themselves on the practical and theological significance of disability. Following the work started here, further interpretation and analysis will be needed in order to assess the legacies of these figures and to discern their usefulness for thinking about disability today. In this respect the reader serves as a helpful invitation for further historical and constructive work.Some of the finest essays in the volume focus on disability in order to illuminate the theologians under consideration in surprising ways. Christopher Craig Brittain’s essay on Kierkegaard appeals to his letters and manuscripts in order to show how questions of suffering, marginalization, and self-acceptance are crucial aspects of Kierkegaard’s understanding of being human and being Christian—and how his work might contribute to current debates in disability theory and theology. Bernd Wannenwetsch shows how Dietrich Bonhoeffer’s visit to a community for persons with disabilities in 1933 was a pivotal experience in the formation of his anthropology. Wannenwetsch compellingly argues that Bonhoeffer’s advocacy on behalf of the weak and disabled is integrally connected to his opposition to the destructive rival anthropology advocated under Nazi rule. These essays make important contributions both to our reflection on disability as well as to our understanding of Kierkegaard and Bonhoeffer’s wider thought.A variety of perspectives on the meaning of disability are on display in this volume. One comes away with the impression that the “dialogue with the communion of saints” (3) called for in the introduction might be more of a debate than a harmonious discourse. The historical thinkers featured here do not offer one Christian account of disability that might be set against modern and secular perspectives on disability, but they do offer much that is productive for ethicists and theologians today.This volume is important for anyone concerned with theological reflection on disability, but it would be a shame if the book’s readership were limited to such a group. Historical theologians and readers interested in the theological and ethical issues pertaining to Christian anthropology and questions of embodiment, suffering, and vulnerability will find much that is of value. Indeed, it is one of the lessons of the volume that disability is not just a marginal or trendy topic in the contemporary theological scene but a central aspect of human personhood that has played an important if complex role in the understanding of what it means to be human throughout the Christian tradition. [End Page 239]Kevin McCabeUniversity of Notre DameCopyright © 2014 Society of Christian Ethics... (shrink)

Testimony by disabled people concerning the relationship between their experiences and overall well-being has long been an object of social scientific and humanistic study. Often discussed in terms of “the disability paradox,” these studies contrast the intuitive horribleness of certain impaired states against the testimonial evidence suggesting that people in such states do not in fact experience their lives as horrible. Explanations for why such testimonial evidence is suspect range from claims about adaptive preferences to issues of qualitative (...) research methodology. In this paper, I argue that the problem lies not with the evidence, but the intuitions in question. Using the disability paradox as a case study, I further argue against the use of the concept of intuitive horribleness in social epistemology and beyond. I contend that testimonial and hermeneutical injustices are baked into most deployments of the concept, and even if one were to justify its use in select cases, it should be accompanied with prima facie suspicion. In conclusion, I discuss the implications of this analysis for the literature on transformative experience and also for the stakes of multi-cultural, historically informed philosophical inquiry more generally. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Disability in the Christian Tradition: A Reader Edited by Brian Brock and John SwintonKevin McCabeDisability in the Christian Tradition: A Reader EDITED BY BRIAN BROCK AND JOHN SWINTON Grand Rapids, MI: Eerdmans, 2012. 576 pp. $45.00Disability in the Christian Tradition makes an important contribution to the growing area of theological inquiry known as “theology of disability.” While questions of physical and intellectual difference are getting much-deserved (...) attention from religious ethicists and constructive theologians today, relatively little attention has been given to the treatment of what we now call “disability” throughout the history of Christian thought and especially in the premodern era. This volume seeks to remedy this situation by highlighting the theological consideration of disability in Christian thinkers from the patristic era to the present. Against tendencies to treat disability as a “special case” for thinking about humanity, this volume seeks to show the often overlooked presence of reflection on disability throughout the tradition.The volume pairs introductory and interpretive essays from contemporary scholars with primary source selections from each historical thinker. Essays on Augustine, Aquinas, and Luther help to correct the historical record, which often remembers these theologians as advocating rationalist or exclusionary anthropologies that marginalize or significantly compromise the humanity of persons with disabilities. These thinkers prove to be more nuanced and insightful than is often thought. However, as Brian Brock points out with respect to Augustine, and as Stefan Heuser points out with respect to Luther, [End Page 238] these figures are often ambivalent or at odds with themselves on the practical and theological significance of disability. Following the work started here, further interpretation and analysis will be needed in order to assess the legacies of these figures and to discern their usefulness for thinking about disability today. In this respect the reader serves as a helpful invitation for further historical and constructive work.Some of the finest essays in the volume focus on disability in order to illuminate the theologians under consideration in surprising ways. Christopher Craig Brittain’s essay on Kierkegaard appeals to his letters and manuscripts in order to show how questions of suffering, marginalization, and self-acceptance are crucial aspects of Kierkegaard’s understanding of being human and being Christian—and how his work might contribute to current debates in disability theory and theology. Bernd Wannenwetsch shows how Dietrich Bonhoeffer’s visit to a community for persons with disabilities in 1933 was a pivotal experience in the formation of his anthropology. Wannenwetsch compellingly argues that Bonhoeffer’s advocacy on behalf of the weak and disabled is integrally connected to his opposition to the destructive rival anthropology advocated under Nazi rule. These essays make important contributions both to our reflection on disability as well as to our understanding of Kierkegaard and Bonhoeffer’s wider thought.A variety of perspectives on the meaning of disability are on display in this volume. One comes away with the impression that the “dialogue with the communion of saints” (3) called for in the introduction might be more of a debate than a harmonious discourse. The historical thinkers featured here do not offer one Christian account of disability that might be set against modern and secular perspectives on disability, but they do offer much that is productive for ethicists and theologians today.This volume is important for anyone concerned with theological reflection on disability, but it would be a shame if the book’s readership were limited to such a group. Historical theologians and readers interested in the theological and ethical issues pertaining to Christian anthropology and questions of embodiment, suffering, and vulnerability will find much that is of value. Indeed, it is one of the lessons of the volume that disability is not just a marginal or trendy topic in the contemporary theological scene but a central aspect of human personhood that has played an important if complex role in the understanding of what it means to be human throughout the Christian tradition. [End Page 239]Kevin McCabeUniversity of Notre DameCopyright © 2014 Society of Christian Ethics... (shrink)

Most of us want to have children. We want them to be healthy and have a good start in life. One way to achieve this goal is to use preimplantation genetic diagnosis . PGD enables people engaged in the process of in vitro fertilisation to acquire information about the genetic constitution of an early embryo. On the basis of this information, a decision can be made to transfer embryos without genetic defects to the uterus and terminate those with genetic defects.1However, (...) is it morally acceptable to use PGD to reduce the probability of children with severe genetic diseases being born? Is the current routine use of PGD in public healthcare services to select against severe genetic diseases like anencephaly, spina bifida, cystic fibrosis and Down’s syndrome morally acceptable?These are complex questions involving a range of difficult ethical issues—for instance, critical discussions about the morality of embryo research and embryo termination.2 They also involve awkward conceptual issues concerning such matters as the meaning of words such as “disability”3 and “severe” in “severe genetic diseases”,4 which will not be discussed here.In this paper I examine an argument which aims to show that efforts to prevent the birth of severely disabled children using PGD are morally unacceptable. Essentially, this argument appeals to our concern for disabled people and the belief that PGD, through a slippery slope process, will have bad consequences for them. I conclude that the argument is problematic for a number of reasons. But before I examine the argument itself, it will be helpful to separate two types of slippery slope argument since these involve different kinds of reasoning.TWO TYPES OF ARGUMENTMany of the arguments against PGD point to the bad consequences it can be expected to have for disabled people. Central to all these …. (shrink)

With increased frequency, reproductive technologies are placing prospective parents in the position of choosing whether to bring a disabled child into the world. The most well-known objection to the act of “selecting against disability” is known as the Expressivist Argument. The argument claims that such acts express a negative or disrespectful message about disabled people and that one has a moral reason to avoid sending such messages. We have two primary aims in this essay. The first is to (...) critically examine the standard Expressivist Argument, which we analyze in terms of the expression of ableist attitudes. We distinguish three interpretations of the argument and argue that each version faces serious objections. Our second aim is to articulate two closely related arguments that also pertain to expressed ableist attitudes. The Expressive Harms Argument maintains that there is a moral reason to avoid actions that give rise to the perception of ableist attitudes in cases where this is likely to have negative consequences for disabled people. The Ableist Motivation Argument speaks against selecting against disability in cases where one would be motivated by ableist attitudes. While these two arguments face various objections, we seek to establish that they are more promising than the most natural interpretations of the Expressivist Argument. (shrink)

With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical (...) interference to eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

Disability theorists have argued that the belief that we should prevent the birth of people with disabilities is prejudicial against disabled people. Particularly influential has been the Expressivity Objection to reproductive selective procedures aimed at eliminating disability. The Expressivity Objection in its strongest form says that to prevent the birth of a disabled child is to express the view that a disabled life is not worth living. In its weaker form, it says that to prevent the birth (...) of a disabled child is to perpetuate the stigma of disability or send the message that disabled people are not welcome in this world.Disability, as it is spoken of in these contexts, refers to... (shrink)

_A provocative examination of how unequal access to reproductive technology replays the sins of the eugenics movement_ Eugenics, the effort to improve the human species by inhibiting reproduction of “inferior” genetic strains, ultimately came to be regarded as the great shame of the Progressive movement. Judith Daar, a prominent expert on the intersection of law and medicine, argues that current attitudes toward the potential users of modern assisted reproductive technologies threaten to replicate eugenics’ same discriminatory practices. In this book, Daar (...) asserts how barriers that block certain people’s access to reproductive technologies are often founded on biases rooted in notions of class, race, and marital status. As a result, poor, minority, unmarried, disabled, and LGBT individuals are denied technologies available to well-off nonminority heterosexual applicants. An original argument on a highly emotional and important issue, this work offers a surprising departure from more familiar arguments on the issue as it warns physicians, government agencies, and the general public against repeating the mistakes of the past. (shrink)

On July 2021, the UK High Court of Justice heard the Case CO/2066/2020 on the application of Heidi Crowter who lives with Down’s syndrome, and Máire Lea-Wilson whose son Aidan has Down’s syndrome. Crowter and Lea-Wilson, with the support of the disability rights campaign, ‘Don’t Screen Us Out’, have been taking legal action against the Secretary of State for Health and Social Care (the UK Government) for a review of the 1967 Abortion Act: the removal of section 1(1)(d) (...) making termination of pregnancy lawful for ‘severe’ fetal indications detected after 24 weeks' gestation. On 23 September 2021, the High Court dismissed the claim. This action came at a time when non-invasive prenatal testing (NIPT) was introduced into the NHS England Fetal Anomaly Screening Programme for the trisomies 21, 13 and 18. The implementation of NIPT has been heavily criticised, in particular by ‘Don’t Screen Us Out’ campaigners, for increasing fetal selection and discrimination of people living with disabilities. The case of Crowter and Lea-Wilson echoes debates in other European countries such as in France and Germany, where the introduction of NIPT in the public healthcare system has provoked equally vehement public reactions and discussions. The comparison between these three countries allows contextualising the public discourses around NIPT and the ground for termination of pregnancy in relation to different socio-cultural and political contexts. We examine how each country, and particularly England, deals with the conflict between the principles of promoting the rights of people living with disabilities and preserving women’s reproductive autonomy. (shrink)

This chapter is about personhood in relation to ethics and to conciliar Christian theology, and how concepts of personhood may discriminate against profoundly cognitively disabled human beings. (By ‘conciliar Christian theology’ I mean the Christian theology that is articulated in, or endorsed by, the first seven ecumenical councils.) -/- I believe we can learn several things about personhood by looking at these two topics together. By examining ancient and medieval concepts of personhood and some modern conceptions of personhood we (...) gain a better grasp of the variety of concepts and what substantive work they were intended to do. By becoming familiar with (part of) the history of concepts of personhood we are better situated to appreciate and judge the theoretical work that these concepts were intended to do and what consequences they have in ethical and theological theorizing. -/- In the first section I tell a select history of moral philosophers theorizing about personhood and discuss these in relation to human beings with profound cognitive disability. I focus on John Locke, Immanuel Kant, and Mary Anne Warren. In the “When Personhood Is Discriminatory” section I argue that concepts of personhood, especially modern concepts of personhood, are typically used in a manner that discriminates against human beings with profound cognitive disabilities. I give two arguments against discriminatory uses of personhood, the Moral Shift Argument and the Argument against Exclusive Personhood. Although the Moral Shift Argument is deductively valid, it probably has little persuasive power over those who do not share the moral belief that profoundly cognitively disabled human beings are equal members of the moral community. However, the Argument against Exclusive Personhood has more argumentative force because it denies the claims that personhood is “self-evident” and that it is “obvious” to everyone. In the following section I survey a select history of concepts of personhood in order to establish the claims that concepts of personhood are not self-evident and are not obvious to everyone. This history of personhood goes back to ancient and medieval Christian theorizing and debating about personhood. It shows that concepts of personhood are not “self-evident” but rather are theoretical posits that are posited in theory construction in order to explain certain putative theological facts. Given that personhood is a theoretical posit and is not “self-evident,” moral philosophers who aim to determine the extent of the moral community on the basis of a supposedly “self-evident” concept of personhood are not justified in doing so. Moreover, given the Argument against Exclusive Personhood, philosophical theologians who wish to articulate models of the Trinity or Incarnation that are consistent with the seven ecumenical councils will find that they, like moral philosophers, are not justified to assume, or to insist on, modern personhood for their models of the Trinity or Incarnation. My overall conclusion, then, is that modern personhood is bad for ethics and unnecessary for conciliar ecumenical Christian theology. (shrink)

South Africa’s Choice on Termination of Pregnancy Act of 1996 implicitly expresses the attitude that the prenatal detection of foetal abnormality justifies selective abortion, even at a stage when abortion is in general morally prohibited. It will be argued that this attitude is logically incompatible with a simultaneous commitment to non-discrimination against persons with disabilities, in that the Act makes allowance for the subjection of beings that are considered to be morally significant, but that exhibit disabling characteristics, to worse (...) treatment than their non-disabled counterparts, despite the fact that this differential treatment is not always justified by the presence of impairment. (shrink)

Preimplantation genetic diagnosis and some prenatal screening programmes have been criticized for being 'eugenic'. This paper aims to analyse this criticism and to evaluate one of the main ethical arguments lying behind it. It starts with a discussion of the meaning of the term 'eugenics' and of some relevant distinctions: for example, that between objections to eugenic ends and objections to certain means of achieving them. Next, a particular argument against using preimplantation genetic diagnosis to 'screen out' disability (...) is considered, one based on the Equal Value Principle, which says that we should value disability and non-disability equally. It is argued that present practice and policy probably do violate the Equal Value Principle, but that this principle is itself unsound. (shrink)

This paper focuses on one objection to the use of reproductive genetic technologies (RGTs): the argument known as the expressivist objection. According to this argument, the choice to use reproductive genetic technologies to prevent the birth of individuals with disabilities is an expression of disvalue for existing people with disability. Many have been persuaded by this impassioned perspective. This paper shows that this argument is misguided and so does not constitute a sound objection to the use of RGTs to (...) prevent disability in future children. It first identifies some responses to the objection that may be sound but not completely convincing to proponents of the expressivist position. It then describes a thought experiment designed to demonstrate more clearly that choosing to use RGTs to prevent disability in future children does not convey a negative message about people who have disabilities. After describing a decision that clearly does not send such a message, the paper walks through a series of cases and shows how, despite differences that might seem to be morally relevant, each is morally equivalent to the previous one with respect to the extent that it expresses disvalue for such individuals. (shrink)

This article discusses an anomaly in the English law of reproductive liability: that is, an inconsistency between the law’s approach to wrongful life claims and its approach to cases of negligent selection of gametes or embryos in infertility treatments (the selection cases). The article begins with an account of the legal position, which brings into view the relevant inconsistency: while the law treats wrongful life claims as non- actionable, it recognises a cause of action in the selection (...) cases, although the selection cases bear a relevant resemblance to wrongful life claims. The article then considers arguments that may be invoked in an attempt to reconcile the above two strands of the law. Three of these counterarguments consist in attempts to distinguish the selection cases from wrongful life claims. It is argued that these attempts fail to reveal a valid basis for treating these situations differently. A fourth possible counterargument levels against the present analysis a charge of reductio ad absurdum. It is shown that this argument suffers from a fundamental flaw caused by confusion between different senses of the term “identity”. Finally, the article discusses possible changes to the legal position that could rectify the problem. It argues that one of these changes, which focuses on legal redress for violation of personal autonomy, is particularly apt to resolve the problem at hand, but also highlights the need for further inquiry into the broader implications of introducing this form of redress into the law of torts. (shrink)

The American Journal of Bioethics, Volume 12, Issue 8, Page 30-31, August 2012.

In 2002, then Cambridge student Joanna Jepson initiated a legal, ecclesial, and media conversation on selective termination for disability. Making herself available in a way that is vulnerable, palpable, and effective, Jepson has used subtle rhetorical skill to question the ways certain lives are appraised as precious or expendable. The now Revd Jepson’s witness may adumbrate a boundary past which the task of truly public bioethics becomes precarious. While ethicists may persuasively argue in the public square against positive (...) eugenics — against selectively breeding or genetically enhancing conception — opposition to negative eugenics — against the elimination of ‘unfit’ lives — stretches the bounds of apologetics. The theological bioethicist may be called to gesture toward the Whence? and the Whither?, even if the purveyors of public bioethics find this an objectionable undertaking. (shrink)

In this paper I look at the much-discussed case of disabled parents seeking to conceive disabled children. I argue that the permissibility of selecting for disability does not depend on the precise impact the disability will have on the child’s wellbeing. I then turn to an alternative analysis, which argues that the permissibility of selecting for disability depends on the impact that disability will have on the child’s future opportunities. Nearly all bioethicists who have approached the (...) issue in this way have argued that disabilities like deafness unacceptably constrain a child’s opportunities. I argue, however, that this conclusion is premature for several reasons. Most importantly, we don’t have a good way of comparing opportunity sets. Thus, we can’t conclude that deaf children will grow up to have a constrained set of opportunities relative to hearing children. I conclude by suggesting that bioethicists and philosophers of disability need to spend more time thinking carefully about the relationship between disability and opportunity. (shrink)

This paper argues that the field of philosophy, and bioethics spe­cifically, engages in a series of speech acts that identify scholarship advocating for increased philosophical engagement with the experiences of disability as “activism.” In doing so, the field of philosophy treats these calls as not worthy of consideration, and therefore, to be ignored in “serious scholarship.” Further, this paper makes clear the ways that philosophy relies upon ableism through what Peter Railton calls the “culture of smartness,” which serves as (...) a form of ableist apologia as defined by Jay Dolmage. The paper concludes by using the example of ADHD to indicate how the prevalence of this “culture of smartness” serves to exclude disabled philosophers within the field. (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)

The paper proposes a new method of researching public opinion for the purposes of valuing the outcomes of healthcare interventions. The issue I address is that, under the quality-adjusted life-year system, disabled patients face a higher cost-effectiveness hurdle than able-bodied patients. This seems inequitable. The author considers the alternative approaches to valuing healthcare interventions that have been proposed, and shows that all of them face the same problem. It is proposed that to value an outcome, instead of researching the general (...) public, the population that is to be targeted with the intervention should be researched. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being used to argue for wider recognition of the legal capacity of people with mental disabilities. This raises a question about the implications of the Convention for attributions of criminal responsibility. The present paper works towards an answer by analysing the relationship between legal capacity in relation to personal decisions and criminal acts. Its central argument is that because moral and political considerations play an essential role in (...) setting the relevant standards, legal capacity in the context of personal decisions and criminal acts should not be thought of as two sides of the same coin. The implications of particular moral or political norms are likely to be different in these two legal contexts, and this may justify asymmetries in the relevant standards for legal capacity. However, the analysis highlights a fundamental question about how much weight moral or political considerations should be given in setting these standards, and this is used to frame a challenge to those calling for significantly wider recognition of the legal capacity of people with mental disabilities on the basis of the Convention. (shrink)

Bioethics, Volume 36, Issue 6, Page 680-686, July 2022.

Disability rights (DR) advocates have consistently opposed the legalization of physician-assisted dying (PAD) on the grounds that it wrongly discriminates against the disabled. This chapter distinguishes three variants of this objection. The first and perhaps primary one, based on “soft paternalism,” claims that PAD should not be legalized for the sake of those who might choose it. The second alleges that the laws harm all disabled people by encouraging support for PAD as the cheaper alternative to providing the (...) disabled more social support and protection from discrimination. The third alleges that legalized PAD harms all disabled people by expressing the denigrating message that their lives are less valuable than those of the able. The chapter finds that whatever the merits of the first two objections, DR advocates cannot consistently accept them while maintaining support for a legal right to reject unwanted treatment. It also finds grounds to doubt the cogency of the third objection. (shrink)

Issues in reproductive ethics, such as the capacity of parents to ‘choose children’, present challenges to philosophical ideas of freedom, responsibility and harm. This book responds to these challenges by proposing a new framework for thinking about the ethics of reproduction that emphasizes the ways that social norms affect decisions about who is born. The book provides clear and thorough discussions of some of the dominant problems in reproductive ethics - human enhancement and the notion of the normal, reproductive liberty (...) and procreative beneficence, the principle of harm and discrimination against disability - while also proposing new ways of addressing these. The author draws upon the work of Michel Foucault, especially his discussions of biopolitics and norms, and later work on ethics, alongside feminist theorists of embodiment to argue for a new bioethics that is responsive to social norms, human vulnerability and the relational context of freedom and responsibility. This is done through compelling discussions of new technologies and practices, including the debate on liberal eugenics and human enhancement, the deliberate selection of disabilities, PGD and obstetric ultrasound. (shrink)

It is widely thought that abortion on the grounds of fetal abnormality is morally justified. More controversially, Peter Singer has argued that some infants with severe disabilities ought to be killed. Many disability rights activists object that such claims and practices express disrespect toward disabled persons, even if fetuses and infants are only potentially persons. This can seem puzzling. If disabled fetuses are not members of the community of disabled persons, how can our treatment of the former express disrespect (...) toward the latter? In what follows, I shall argue for two claims: first, the he puzzle is only apparent because whether we respect someone depends not only on how we do treat him but also on how we would treat him were circumstances different, and secondly, “substitutionary arguments” for selective terminations of disabled fetuses or infants do express disrespect toward disabled persons, even if fetuses and infants are only potentially persons. (shrink)

This Article examines the influence of the Americans with Disabilities Act (ADA) on affective attitudes toward children with disabilities and on the incidence of disability-selective abortion. Applying regression analysis to U.S. natality data, we find that the birthrate of children with Down syndrome declined significantly in the years following the ADA's passage. Controlling for technological, demographic, and cultural variables suggests that the ADA may have encouraged prospective parents to prevent the existence of the very class of people the Act (...) was designed to protect. We explain this paradox by showing how specific ADA provisions could have given rise to demeaning media depictions and social conditions that reinforced negative understandings and expectations among prospective parents about what it means to have a child with a disability. We discuss implications for reproduction law and antidiscrimination policy. (shrink)

Care staff in Norway usually work in the private homes of people with intellectual disabilities. Staff experience ethical challenges daily in their interactions with their clients. The aim of this paper is to introduce a vignette validation procedure for selection of practice-close vignettes that can be used to elicit and explore staff reflections on ethical challenges in their work. Staff participants were recruited from different municipalities in one county of Norway. To develop vignettes with good internal validity, the validation (...) process consisted of (1) a field study to identify situations to be included as vignettes, (2) a six-step categorization process to select vignettes with good internal validity, (3) transforming the situations into vignettes, including removal of elements that were too leading or constricting, (4) testing the familiarity and relevance of the preliminary sample of vignettes (external validation), (5) final selection of four vignettes to be included in the investigation, and (6) a validation of the four vignettes? familiarity and practical relevance as ethical challenges by the final sample of interviewees. Our preliminary experience indicates that the validation procedure enhanced the selection of vignettes to elicit staff perceptions and reflections on daily ethical challenges. (shrink)

It may appear that there are grounds for an alliance between opponents of enhancement and disability advocates. People from both camps condemn parents who aspire to improve the physical and psychological traits their children would otherwise be born with, a condemnation often expressed as an accusation of eugenics. Despite these superficial appearances, the author will argue that disability advocates have nothing to applaud in Michael Sandel’s critique of enhancement, which is based on false and sometimes pernicious claims about (...) the value of ‘normal’ human beings. However, they will also argue that disability advocates fail to provide convincing reasons for condemning parental decisions to avoid or eliminate certain traits their children would otherwise be born with. Contrary to what disability advocates and opponents of enhancement suggest, it is often a violation rather than an instantiation of parental virtue to abandon judgements about whether one’s children’s biological givens should be changed. (shrink)