While fetal surgery—and pregnancy termination as a possible therapeutic alternative—have been examined in a number of studies, very few have addressed the issues and tensions that arise when prenat...

In this paper, I argue that disabled people have a right to assistive technology, but this right cannot be grounded simply in a broader right to health care or in a more comprehensive view like the capabilities approach to justice. Both of these options are plagued by issues that I refer to as the problem of constriction, where the theory does not justify enough of the AT that disabled people should have access to, and the problem of overextension, where the (...) theory cannot adequately identify an upper limit on the AT that people have a right to. As an alternative to these justificatory frameworks, I argue that disabled people are owed access to AT at the expense of nondisabled people as a matter of compensatory justice. That is, I defend the position that disabled people are owed AT as part of due compensation for the harms they experience from being disadvantaged by society’s dominant cooperative scheme and the violation of their right to equality of opportunity that such disadvantage entails. I also propose a method for identifying an upper limit to what this right to AT requires. In this way, I argue that compensatory justice avoids both the problem of constriction and the problem of overextension. (shrink)

In this paper, I argue that, even when disability rights activists are most clearly acting as activists, they can advance the scholarly activity of disability bioethics. In particular, I will argue that even engaging in non-violent direct action, including civil disobedience, is an important way in which disability rights activists directly support the efforts of disability bioethics scholars. I will begin by drawing upon Hilde Lindemann’s work on relational narrative identity to describe how certain damaging master narratives about disability hinder (...) the uptake of arguments from disability bioethics. Then, I will argue that disability activism, especially non-violent direct action and civil disobedience, provides an effective counterstory to some of the worst of these master narratives, thereby laying the groundwork for the scholarly argument s of disability bioethicists to be given more serious consideration. Ultimately, I conclude that the field of bioethics is improved when it abandons the gross grained, generalizations about who disabled people are and how they act put forth by oppressive master narratives in favor of the more nuanced self-descriptions offered by the counterstories being offered by disabled people themselves. So it is that, by challenging these oppressive master narratives that constrain and distort the social meaning of disability, disability activism can improve mainstream bioethics. (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)

Ever since the publication of Derek Parfit’s Reasons and Persons, bioethicists have tended to distinguish between two different ways in which reproductive technologies may have implications for the...

This article examines the conceptual claim that prenatal genetic testing, given the option to abort disabled fetuses, discriminates against the disabled. The claim is examined in the context of both external quality of life judgments and women’s competing interests in and right to reproductive freedom. The conceptual claim to discrimination fails in both contexts if moral standing is not attributed to the fetus.

In March 2019, the German Gemeinsamer Bundesausschuss (G‑BA; Federal Joint Committee) presented the result of the method assessment process on non-invasive prenatal testing (NIPT). The aim of this method assessment process was to decide whether NIPT should become a publicly funded procedure of routine prenatal care. The G‑BA decided in favor of NIPT, making the implementation of NIPT very likely, provided that other healthcare and political institutions also agree. This development could be interpreted as empowering from the perspective of reproductive (...) autonomy, since NIPT allows pregnant women to obtain valuable information on the health of the fetus in a fast and easy manner and without the risks of invasive methods. However, the routinization of NIPT also implies ethical challenges. Will the routinization lead to a normalization of prenatal quality control? Will it lead to an expansion to women outside the high-risk group? What would be the ethical implications of such a development? How should physicians, geneticists, and patients deal with the increased amount of obtainable information? What are the implications for choice and decision-making in the prenatal care context? In this paper, we analyze the ethical aspects of the routinization of NIPT, focusing on information and the counseling process, the burden of choice, and the threats to reproductive autonomy by societal interests linked to NIPT. (shrink)

In March 2019, the German Gemeinsamer Bundesausschuss (G‑BA; Federal Joint Committee) presented the result of the method assessment process on non-invasive prenatal testing (NIPT). The aim of this method assessment process was to decide whether NIPT should become a publicly funded procedure of routine prenatal care. The G‑BA decided in favor of NIPT, making the implementation of NIPT very likely, provided that other healthcare and political institutions also agree. This development could be interpreted as empowering from the perspective of reproductive (...) autonomy, since NIPT allows pregnant women to obtain valuable information on the health of the fetus in a fast and easy manner and without the risks of invasive methods. However, the routinization of NIPT also implies ethical challenges. Will the routinization lead to a normalization of prenatal quality control? Will it lead to an expansion to women outside the high-risk group? What would be the ethical implications of such a development? How should physicians, geneticists, and patients deal with the increased amount of obtainable information? What are the implications for choice and decision-making in the prenatal care context? In this paper, we analyze the ethical aspects of the routinization of NIPT, focusing on information and the counseling process, the burden of choice, and the threats to reproductive autonomy by societal interests linked to NIPT. (shrink)

In March 2019, the German Gemeinsamer Bundesausschuss (G‑BA; Federal Joint Committee) presented the result of the method assessment process on non-invasive prenatal testing (NIPT). The aim of this method assessment process was to decide whether NIPT should become a publicly funded procedure of routine prenatal care. The G‑BA decided in favor of NIPT, making the implementation of NIPT very likely, provided that other healthcare and political institutions also agree. This development could be interpreted as empowering from the perspective of reproductive (...) autonomy, since NIPT allows pregnant women to obtain valuable information on the health of the fetus in a fast and easy manner and without the risks of invasive methods. However, the routinization of NIPT also implies ethical challenges. Will the routinization lead to a normalization of prenatal quality control? Will it lead to an expansion to women outside the high-risk group? What would be the ethical implications of such a development? How should physicians, geneticists, and patients deal with the increased amount of obtainable information? What are the implications for choice and decision-making in the prenatal care context? In this paper, we analyze the ethical aspects of the routinization of NIPT, focusing on information and the counseling process, the burden of choice, and the threats to reproductive autonomy by societal interests linked to NIPT. (shrink)

Some disability rights advocates criticise prenatal testing and selective abortion on the grounds that these practices express negative attitudes towards existing persons with disabilities. Disability rights advocates also commonly criticise and oppose physician-assisted suicide (PAS) and euthanasia on the same grounds. Despite the structural and motivational similarity of these two kinds of arguments, there is no literature comparing and contrasting their relative merits and the merits of responses to them with respect to each of these specific medical practices. This paper (...) undertakes such a comparison. My thesis is that a number of potentially significant weaknesses of the expressivist argument against reproductive technologies are avoided when the argument is used against PAS. In particular, I try to show that three common criticisms of the expressivist argument applied to reproductive technologies, whatever merit they have, have even less merit when they are used to reply to the expressivist argument applied to PAS. This is important because the expressivist argument applied to the end of life scenario does not get as much attention as the argument applied to the beginning of life scenario, and yet it has a relatively stronger position. (shrink)

Both of the main points in Professor Murphy's paper seem to me clearly and effectively argued.1 It is incontrovertible that some people find hurtful the use of medical technologies to avoid the birth of children who, in the present order of things, would be disabled. No result from the philosophy of language, or anywhere else for that matter, can plausibly show otherwise. Indeed, even to speak of ‘legitimately interpreting’ events that cause one pain as ‘hurtful’, as Murphy does, seems a (...) shade too conciliatory to any who has the temerity to doubt this matter: typically, at least, I don't interpret a state of affairs as hurtful. I experience it so—or not.He's quite right to point out as well that the fact that someone's actions cause another to feel hurt does not, on its own, imply much of anything about the action's propriety. There are many serious people who are deeply distressed by others' reproductive choices that have nothing to do with disability: terminating a pregnancy for any reason causes some people considerable pain. Yet there seems no reason whatever to regard that pain, considered on its own, as a reason that—at least in general terms—should bear on a person's decision concerning whether or not to give birth to the fetus that she is gestating.Expressivist arguments, so understood, then, seem to have had their measure taken. If anyone had the temerity to think that no one is hurt by choices to avoid or end pregnancies because they might lead to the birth of a child who would be disabled, they can drop that thought right now. On the other hand, if someone thought that the hurt suffered by such people constitutes a serious reason for restricting what others can find out about their potential or actual pregnancies, or …. (shrink)

Some commentators object to the use of embryonic and fetal diagnostic technologies by parents who wish to avoid disabilities in their children. In particular, they say this use is hurtful in the meaning it expresses, namely that the lives of people with disabilities are not valuable or are less valuable than the lives of others. Other commentators have tried to show that this meaning does not necessarily belong to parents' choices and is not therefore credible as a general moral objection. (...) However, this analysis overlooks the way in which the use of these technologies can be legitimately interpreted as hurtful. Once we admit to these hurtful effects felt by people with disabilities and those who hold them dear, it becomes important to ask whether that hurt can justify limits on parents' choices. Because the use of these technologies does not hurt people with disabilities directly and because there is no requirement that people having children work to ensure the continued existence of people with disabilities, no justification for limiting parents' choices is to be found in the hurt some people experience in steps taken to avoid disabilities in children. (shrink)

In this article, I critically analyze the anthropological foundation of the bioethics of philosopher Jean-François Malherbe, particularly as presented in his book, Pour une Éthique de la Médecine. Malherbe argues that such practices as organ donation and transplants, assisted reproduction, resuscitation, and other uses of biotechnologies in contemporary medicine are unethical because they go against essential human nature. Furthermore, he uses this position as a basis to prescribe public policy and institutional practice. In contrast, I argue not only that ‘human (...) nature’ is much more malleable and adaptive to changes in technology and society than Malherbe allows, but also that his criticisms of medicine and technoscientific development overstep the bounds of the social function of philosophical ethics, which is to inform and clarify public debate. Public policy and institutional practice is thus best left to the democratic political process under the parameters of the just rule of law. (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)

Human germline genome editing is increasingly being seen as acceptable provided certain conditions are satisfied. Accordingly, genetic modifications would take place on eggs or sperm (or their prec...

Developed in the past two decades, the clustered regularly interspaced short palindromic repeats‐associated protein 9 (CRISPR‐Cas9) technique offers greater accessibility and efficiency in editing genes. Its immediate success has transformed medical research and treatment in productive ways, but has also left questions about ethical consequences in its wake. These are questions familiar to bioethical inquiry. How do we balance short‐term and long‐term benefits and risks? How do we promote just and equitable access to new medical interventions? How do we protect (...) respect for individual autonomy? These questions require a balance between protecting individuals' liberties and the good of the communities in which they live. In this essay, I am interested in how the principle of respect for autonomy can be interpreted in light of CRISPR‐Cas9. I argue that a relational autonomy framework forges a middle ground between the need to respect individual freedom to pursue genetic treatments and the need to acknowledge the networks of dependence that define our moral worlds. I identify three thematic areas that relational autonomy brings into greater focus: the importance of trust, the acknowledgment of vulnerability/dependence, and the promotion of justice. Autonomy understood relationally allows us to see individual freedom as tethered to communal well‐being. (shrink)

Two versions of the argument that prenatal diagnosis discriminates against the disabled are distinguished and analysed. Both are shown to be inadequate, but some valid concerns about the social effects of prenatal diagnosis are highlighted.

With the recent advancements in scientific comprehension of genetics and the decipherment of complex techniques for editing human genomes, liberal eugenics—eugenic ideal premised on the liberal values of autonomy and pluralism that leaves reproductive choices to parents rather than anachronistic statist authoritarian interventions—has inevitably become a polarising conundrum in contemporary liberal societies as to its utility and destructiveness. Focusing on one species of liberal eugenics—namely, genome editing interventions—I contend that liberal eugenics could be harmful—harm herein construed as that which undermines (...) the salient liberal values of equality, autonomy, and pluralism—since it is itself antithetical to the bases of the liberal society. This contention is based upon three premises: first, that individuals are rather seldom rational decision-makers such that leaving all reproductive choices to the whims of individual parents would be immensely counterproductive to future offspring’s right to open future; second, that liberal eugenics—much like its authoritarian antecedent—could intersect with myriad identities, including race, class, sex, disability, and sexual orientation in ways that might exacerbate social divisions, marginalise different groups, and engender homogeneity; and third, that it undermines individual autonomy of the future person as a member of the liberal community, particularly if their capacities and abilities are tailored to fit parents’ specific life projects and putatively reasonable conceptions of the good. The underscored potential malaises of liberal eugenics should, I argue, be discursively negotiated between parents and the state via the development of robust general laws that regulate heritable genome editing interventions to ensure that the welfare of the future persons is prioritised and that the liberal commitment to autonomy is immune to antiliberal perversions. (shrink)

Disability activists' redefinition of “disability” as a social, rather than a medical, problem attempts to reassign causality. We explicate the untenable implications of this approach and argue this definition is maleficent, unjust, and inconsistent. Thus, redefining disability as a socially caused phenomenon is, from a moral point of view, ill-advised.

Reproductive freedom plays a pivotal role in debates on the ethics of procreation. This moral principle protects people’s interests in procreative matters and allows them discretion over whether to have children, the number of children they have and, to a certain extent, the type of children they have. Reproductive freedom’s theoretical and political emphasis on people’s autonomy and well-being is grounded in an individual-centred framework for discussing the ethics of procreation. It protects procreators’ interests and significantly reduces the permissible grounds (...) for interference by third parties. In this article I show that procreative decisions have far-reaching effects on the composition and size of the population. The upshot of considering these effects allows for the appreciation of the inadequacy of a framework that solely considers individual (i.e. procreators’) interests to discuss the ethics of procreation. To address such inadequacy, I assess costs and benefits of past and present proposals to reflect on procreation in such a way as to consider its far-reaching effects. I conclude by arguing that reproductive freedom should be defended as an imperfect but instrumentally necessary tool. This framing would enable those participating in debates on the ethics of procreative decisions to work towards an ethical framework that accounts for the cumulative effects of these decisions. (shrink)

This paper explores the ethics of introducing genome-editing technologies as a new reproductive option. In particular, it focuses on whether genome editing can be considered a morally valuable alternative to preimplantation genetic diagnosis. Two arguments against the use of genome editing in reproduction are analysed, namely safety concerns and germline modification. These arguments are then contrasted with arguments in favour of genome editing, in particular with the argument of the child’s welfare and the argument of parental reproductive autonomy. In addition (...) to these two arguments, genome editing could be considered as a worthy alternative to PGD as it may not be subjected to some of the moral critiques moved against this technology. Even if these arguments offer sound reasons in favour of introducing genome editing as a new reproductive option, I conclude that these benefits should be balanced against other considerations. More specifically, I maintain that concerns regarding the equality of access to assisted reproduction and the allocation of scarce resources should be addressed prior to the adoption of genome editing as a new reproductive option. (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)

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)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in the specific field of (...) genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

Procreative obligations are often discussed by evaluating only the consequences of reproductive actions or omissions; less attention is paid to the moral role of intentions and attitudes. In this paper, I assess whether intentions and attitudes can contribute to defining our moral obligations with regard to assisted reproductive technologies already available, such as preimplantation genetic diagnosis (PGD), and those that may be available in future, such as reproductive genome editing and ectogenesis, in a way compatible with person‐affecting constraints. I propose (...) the parent–child relationship argument, which is based on the moral distinction between creating and parenting a child. Hence, I first argue that intentions and attitudes can play a role in defining our moral obligations in reproductive decisions involving PGD. Second, I maintain that if we accept this and recognize reproductive genome editing and ectogenesis as person‐affecting procedures, we should be committed to arguing that prospective parents may have moral reasons to prefer reproduction via such techniques than via sexual intercourse. In both cases, I observe an extension of our procreative responsibility beyond what is proposed by the consequentialist person‐affecting morality. (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)