Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of (...) class='Hi'>disability over the last fifty years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up (...) two more specific clusters of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment (...) to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

The leading models of disability struggle to fully encompass all aspects of “disability.” This difficulty arises, the author argues, because the models fundamentally misunderstand the nature of disability. Current theoretical approaches to disability can be understood as “nounal,” in that they understand disability as a thing that is caused or embodied. In contrast, this paper presents an adverbial perspective on disability, which shows that disability is experienced as a personally irremediable impediment to daily-living (...) tasks or goals-like-ours. The picture theory of disability technically constitutes a species of relational approach because its analysis references the interplay between an individual and their environment; it differs from other relational accounts, however, by interpreting disability as a certain kind of negative experience—rather than a function of that relationship. This purely descriptive theory makes no normative claims about disability and operates as both a mechanism for the evaluation of the experience of disability and a heuristic device for the proper interpretation of disability. When disability is reframed in this way, the theory offers a particularist perspective which shows if, when, where, and how disability is experienced. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and disability, (...) and the second by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

Disability Justice in Public Health Emergencies is the first book to highlight contributions from critical disability scholarship to the fields of public health ethics and disaster ethics. It takes up such contributions with the aim of charting a path forward for clinicians, bioethicists, public health experts, and anyone involved in emergency planning to better care for disabled people—and thereby for all people—in the future. Across 11 chapters, the contributors detail how existing public health emergency responses have failed and (...) still fail to address the multi-faceted needs of disabled people. They analyze complications in the context of epidemic and pandemic disease and emphasize that vulnerabilities imposed upon disabled people track and foster patterns of racial and class domination. -/- The central claim of the volume is that the ethical and political insights of disability theory and activism provide key resources for equitable disaster planning for all. The volume builds upon the existing efforts of disability communities to articulate emergency planning priorities and response measures that take into account the large body of qualitative and quantitative research on disabled people’s health, needs, and experiences. It is only by listening to disabled people’s voices that we will all fare better in future public health emergencies. (shrink)

Individuals with ‘severe’ cognitive disabilities are primarily discussed in philosophy and bioethics to determine their moral status. In this paper it is argued that theories of moral status have limited relevance to the unjust ways in which people with cognitive disabilities are routinely treated in the actual world, which largely concerns their relegation to an inferior social status. I discuss three possible relationships between moral and social status, demonstrating that determinate answers about the moral status of individuals with ‘severe’ (...) cognitive disabilities are neither necessary nor sufficient for defending the imperative that they be treated as our social equals. (shrink)

Human dignity—is it a useful concept in bioethics, one that sheds important light on the whole range of bioethical issues, from embryo research and assisted reproduction, to biomedical enhancement, to care of the disabled and the dying? Or is it, on the contrary, a useless concept—at best a vague substitute for other, more precise notions, at worst a mere slogan that camouflages unconvincing arguments and unarticulated biases?

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics (...) literature, which focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (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)

In "Frailty Triage: Is Rationing Intensive Medical Treatment on the Grounds of Frailty Ethical?," Wilkinson (2021) argues that the use of frailty scores in ICU triage does not necessarily involve discrimination on the basis of disability. In support of this argument, he claims, “it is not the disability per se that the score is measuring – rather it is the underlying physiological and physical vulnerability." While we appreciate the attention Wilkinson explicitly pays to disability in this piece, (...) we find the distinction between disability and underlying vulnerability untenable both theoretically and practically. In this peer commentary, we begin with a brief overview of research in philosophy of disability concerning the meaning of the concept itself. We argue that this research demonstrates that many forms of disability do not involve underlying vulnerabilities, and, furthermore, that Wilkinson equivocates between "disability" understood as a medical category vs. "disability" understood as a feature of lived experience. We reject Wilkinson’s distinction on these grounds and offer further considerations to avoid disability discrimination in emergency and crisis standards of care contexts. (shrink)

The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large. Those who wish to improve their clinical practice might struggle, however, to keep up with developments across numerous disability communities as well as the ever-growing body of disability studies scholarship. To assist with this goal, (...) I offer an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes. (shrink)

[This piece is written for those working in communication studies and in healthcare writ large, with the aim of bringing insights from disability studies and philosophy of disability to bear on discussion concerning disability in those fields.] Despite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still (...) today structures many cases of patient–practitioner communication. Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” of disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end. (shrink)

Abstract In this article, I offer an account of how the individualized and medicalized conception of disability that prevailsin philosophy is naturalized in bioethics, cognitive science, feminist philosophy, political philosophy, and other subfields of the discipline. By the end of the article, I will have both indicated how disabled people are constituted in philosophical discourse as a problem to be rectified or eliminated and explained how the prevalence in philosophy of this naturalized conceptionof disability contributes to and (...) reinforces the exclusion ofdisabled philosophersfrom the profession of philosophy. Critical philosophical work on disability is an important means with which to resist and subvert this exclusion. (shrink)

This essay attempts to explain the traditional and contemporary philosophical neglect of disability by arguing that the philosophical prioritization of rationality leads to a distinctly philosophical conception of disability as a negative category of non-normative embodiment. I argue that the privilege given to rationality as distinctive of what it means to be both a human subject and a moral agent informs supposedly rational norms of human embodiment. Non-normative types of embodiment in turn can only be understood in contradistinction (...) to these rationalized norms, which are predicated on the elimination of certain features and types of embodiment deemed inimical to reason. To establish this thesis, I focus on Platonic philosophy and the Republic as Platonic conceptions of reason and normative types of embodiment have a historical and conceptual influence on contemporary assumptions concerning rational human nature, medicine, mental health, vice, disease, and impairment. (shrink)

The privation theory of evil (PTE) states that evil is the absence of some good that is supposed to be present. For example, if vision is an intrinsic good, and if human beings are supposed to have vision, then PTE implies that a human being’s lacking vision is an evil, or a bad state of affairs. The mere-difference view of disability (MDD) states that disabilities like blindness are not inherently bad. Therefore, it would seem that lacking sight is not (...) a bad state of affairs. Thus PTE and MDD seem to be in tension. This essay discusses that apparent tension and explains how it might be resolved without doing violence to either view. Given the prominence of PTE in the history of Christian theology, and the wide support for MDD among disability theorists, it is worth finding a way to harmonize these two views. (shrink)

This paper has two goals. The first is to argue that the field of bioethics in general and the literature on ideal vs. nonideal theory in particular has underemphasized a primary problem for normative theorizing: the role of conditioning principles. I define these as principles that implicitly or explicitly ground, limit, or otherwise determine the construction and function of other principles, and, as a result, profoundly impact concept formation, perception, judgment, and action, et al. The second is to demonstrate (...) that ableism is one such conditioning principle and that it undermines the field of bioethics and the practice of biomedicine from achieving the aim of justice as fairness. After briefly addressing the history and critiques of principlism in bioethics, I lay out and defend my account of conditioning principles. I then argue that ableism is one such principle and demonstrate it at work through an analysis of a storied debate between Eva Kittay, Peter Singer, and Jeff McMahan. In conclusion, I contend that the ethical and philosophical dangers of conditioning principles are too easily exacerbated by ideal theory frameworks, and I do so by demonstrating how they are especially liable to generate epistemic injustice, especially contributory and hermeneutical injustice. (shrink)

This is a 2000-word review of Eva Kittay's recent book on cognitive disability.

Because many involuntarily childless people have equal interests in benefitting from assisted reproductive technologies like in vitro fertilization as a mode of treatment, we have normative reasons to ensure inclusive access to such interventions for as many of these people as is reasonable and possible. However, the prevailing eligibility criterion for access to assisted reproductive technologies—'infertility'—is inadequate to serve the goal of inclusive access. This is because the prevailing frameworks of infertility, which include medical and social infertility, fail to precisely (...) capture and unify the relevance of certain involuntarily childless experiences as warranting assisted reproductive technology (ART) treatment. I argue that the least we can do for those who have an interest in accessing ARTs is to conceptualize involuntarily childless experiences in dialogue with interactionist and ecological models of disability, to outline a unified and more inclusive eligibility criterion. (shrink)

We can say that it is necessary for every human being to walk towards the comprehension of the contingent and limited reality of the human person, starting with those whose work involves dealing with patients, as well as those who dedicate themselves to bioethical reflection, and even the patients themselves. In this way, at the time when these people face a situation of pain and suffering, they will be able to assume it with integrity and strength, always choosing to protect (...) the valuable gift of human life, and not simply looking for it. to make the pain disappear as it may, tearing it up at the root, often ending up with a human life, be it at the moment of conception, as an embryo, with disabilities, sick or aging. -/- Podemos decir que es necesario que todo ser humano camine hacia la comprensión de la realidad contingente y limitada de la persona humana, empezando por aquellos cuyo trabajo involucra el trato con pacientes, así como quienes se dedican a la reflexión bioética, e incluso los mismos pacientes. De esta manera, en el momento en que estas personas se enfrenten a una situación de dolor y sufrimiento, podrán asumirla con entere-za y fortaleza, optando siempre por proteger el valioso don de la vida humana, y no simplemente buscando hacer desaparecer el dolor a como dé lugar, arrancándolo de raíz, muchas veces terminando con una vida huma-na, sea en el momento de la concepción, como embrión, con discapacidades, enferma o envejecida. (shrink)

Nelson et al.(2023) argue that the inclusion of personal experience in bioethical debates has significant benefits and liabilities, illustrating their claim with two examples: unproven medical treatments and disability bioethics. We believe that the benefits of including personal experience in disability bioethics far exceed its liabilities. The absence of participants with relevant experience impoverishes and biases bioethical debates, while the biases risked by their inclusion are hardly unique to personal experiences and are readily mitigated.

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

In this open peer commentary, we concur with the three target articles’ analysis and positions on abortion in the special issue on Roe v. Wade as the exercise of reproductive liberty essential for the bioethical commitment to patient autonomy and self-determination. Our proposed OPC augments that analysis by explicating more fully the concept crucial to Roe of fetal personhood. We explain that the development and use of predictive reproductive technologies over the fifty years since Roe has changed the literal image, (...) and thereby the epistemological landscape, through which a prospective parent comes to know the fetus. The logic of Roe required a legal and ethical denial of fetal personhood to prioritize maternal autonomy over claims to fetal moral personhood. Our claim is that such a denial may be more complicated today. The fetal person genetic testing and reproductive imaging now presents to prospective parents has become an increasingly individualized, distinct medicalized picture of a developing person with which a parent can either identify or differentiate. In contrast, the fetal person of Roe was an abstract and vague figure stripped of most human particulars, a pregnancy rather than the specific individualized human entity reproductive technology now presents as a person to prospective parents. We discuss the implications of this shift and call for a more capacious analysis of reproductive ethics that works towards both reproductive and disability justice. (shrink)

Feminists have indicated the inadequacies of bioethical debates about human embryonic stem cell research, which have for the most part revolved around concerns about the moral status of the human embryo. Feminists have argued, for instance, that inquiry concerning the ethics and politics of human embryonic stem cell research should consider the relations of social power in which the research is embedded. My argument is that this feminist work on stem cells is itself inadequate, however, insofar as it has not (...) incorporated an analysis of disability into its considerations of the ethical and political issues that surround the phenomena. Thus, I consider claims that disability theorists and anti-disability activists have made about the research. I conclude by indicating that stem cell research must be situated within a cultural matrix that operates in the service of normalisation. (shrink)

In this peer commentary on L. Syd M. Johnson’s “Inference and Inductive Risk in Disorders of Consciousness,” I argue for the necessity of disability education as an integral component of decision-making processes concerning patients with DOC and, mutatis mutandis, all patients with disabilities. The sole qualification Johnson places on such decision-making is that stakeholders are educated about and “understand the uncertainties of diagnosis and prognosis.” Drawing upon research in philosophy of disability, social epistemology, and health psychology, I argue (...) that this educational qualification is insufficient to address systemic ableism and other forms of epistemic bias in quality of life judgments. (shrink)

One way to determine whether a mental condition should be considered a disorder is to first give necessary and sufficient conditions for something to be a disorder and then see if it meets these conditions. But this approach has been criticized for begging normative questions. Concerning autism (and other conditions), a neurodiversity movement has arisen with essentially two aims: (1) advocate for the rights and interests of individuals with autism, and (2) de-pathologize autism. We argue that denying autism’s disorder status (...) could undermine autism’s exculpatory role in cases where individuals with autism are charged with a crime. Our argument raises a dilemma for the neurodiversity movement: advocating for the rights and interests of individuals with autism may require viewing autism as a condition that can be inherently disabling (at least for some individuals). If this is right, autism’s disorder status might be maintained (again, at least for some individuals) without deriving this result from any general account of disorder. (shrink)

In this paper, I argue that the concept of normality in medical research and clinical practice is inextricable from the concept of ambiguity. I make this argument in the context of Edmund Pellegrino's call for a renewed reflection on medicine’s basic concepts and by drawing on work in critical disability studies concerning Deafness and body integrity identity disorder. If medical practitioners and philosophers of medicine wish to improve their understanding of the meaning of medicine as well as its concrete (...) practice, I contend that they should take seriously the import and centrality of ambiguity for biomedicine. (shrink)

Recently, bioethicists and the UNCRPD have advocated for supported medical decision-making on behalf of patients with intellectual disabilities. But what does supported decision-making really entail? One compelling framework is Anita Silvers and Leslie Francis’ mental prosthesis account, which envisions supported decision-making as a process in which trustees act as mere appendages for the patient’s will; the trustee provides the cognitive tools the patient requires to realize her conception of her own good. We argue that supported decision-making would be better understood (...) as a collaborative process, giving patients with intellectual disabilities the opportunity to make decisions in a respectful relationship with trusted others. We offer an alternative account of supported decision-making where the primary constraint is to protect the patient from domination by the trustee. This is advantageous in its preservation of the prospects for genuine collaboration, for the mental prosthesis approach ultimately reinforces a problematic ideal of isolated patient self-determination. (shrink)

This paper sets out to defend human genetic engineering with a new bioethical approach, post-humanism, combined with a radical democratic political framework. Arguments for the restriction of human genetic engineering, and specifically germ-line enhancement, are reviewed. Arguments are divided into those which are fundamental matters of faith, or "bio-Luddite" arguments, and those which can be addressed through public policy, or "gene-angst" arguments.The four bio-Luddite concerns addressed are: Medicine Makes People Sick; There are Sacred Limits of the Natural Order; Technologies Always (...) Serve Ruling Interests; The Genome is Too Complicated to Engineer. I argue that these are matters of faith that one either accepts or rejects, and that I reject.The non-fundamentalist or pragmatic concerns I discuss are: Fascist Applications; The Value of Genetic Diversity; The Geneticization of Life; Genetic Discrimination and Confidentiality; Systematically Bad Decisions by Parents; Discrimination Against the Disabled; Unequal Access; The Decline of Social Solidarity. I conclude that all these concerns can be adequately addressed through a proactive regulative framework administered by a liberal democratic state. Therefore, even germ-line genetic enhancement should eventually made available since the potential benefits greatly outweigh the potential risks. (shrink)

Allocation of very scarce medical interventions such as organs and vaccines is a persistent ethical challenge. We evaluate eight simple allocation principles that can be classified into four categories: treating people equally, favouring the worst-off, maximising total benefits, and promoting and rewarding social usefulness. No single principle is sufficient to incorporate all morally relevant considerations and therefore individual principles must be combined into multiprinciple allocation systems. We evaluate three systems: the United Network for Organ Sharing points systems, quality-adjusted life-years, and (...) disability-adjusted life-years. We recommend an alternative system—the complete lives system—which prioritises younger people who have not yet lived a complete life, and also incorporates prognosis, save the most lives, lottery, and instrumental value principles. (shrink)

This article explores the Nuffield Council on Bioethics’ recent report about non-invasive prenatal testing. Given that such testing is likely to become the norm, it is important to question whether there should be some ethical parameters regarding its use. The article engages with the viewpoints of Jeff McMahan, Julian Savulescu, Stephen Wilkinson and other commentators on prenatal ethics. The authors argue that there are a variety of moral considerations that legitimately play a significant role with regard to (prospective) parental (...) decision-making in the context of NIPT, for example, views on the morality of abortion and understandings of the impact of disability on quality of life. The variable nature of such considerations, both singularly and combined, suggests that any approach to NIPT should be sensitive to and understanding of similarly variable parental assessments and decisions. The implications of the approach developed for current and future policies in this area are explored, along with the impact of such arguments on ideas about procreative beneficence. (shrink)

As parents of a young woman who very much resembles Ashley, we recognize the way her parents speak of their daughter’s preciousness, and of the love and joy she brings into their life. We know too well the hardships associated with rearing a child with severe physical and intellectual disabilities, especially in our own society, unyielding as it is to the medical needs even “normals” have. We would not have our daughter Sesha undergo similar interventions. We do not believe she (...) is a perpetual child, even if her intellectual capacities do not exceed those of a child, for she has lived for thirty-seven years in this world and with that has acquired knowledge, sensitivities, and sensibilities that no child of “comparable” capacities could have. (shrink)

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person’s digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients’ testimony and treatment preferences, which can be (...) instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry. (shrink)

Genetic engineering technologies are a subclass of the biotechnology family, and are concerned with the use of laboratory-based technologies to intervene with a given organism at the genetic level, i.e., the level of its DNA. This class of technologies could feasibly be used to treat diseases and disabilities, create disease-resistant crops, or even be used to enhance humans to make them more resistant to certain environmental conditions. However, both therapeutic and enhancement applications of genetic engineering raise serious ethical concerns. This (...) paper examines various objections to genetic engineering (as applied to humans) which have been raised in the literature, and presents a new way to frame these issues, and to look for solutions. Specifically, this paper frames genetic engineering technologies within the ‘design turn in applied ethics’ lens and thus situates these technologies as covarying with societal forces. The value sensitive design (VSD) approach to technology design is then appropriated as the conceptual framework in which genetic engineering technologies can be considered so that they can be designed for important human values. By doing so, this paper brings further nuance to the scholarship on genetic engineering technologies by discussing the sociotechnicity of genetic engineering systems rather than framing them as value-neutral tools that either support or constrain values based on how they are used. (shrink)

In this commentary, I suggest expanding the deliberative aspects of critical care policy development in two ways. First, critical-care policy development should expand the scope of deliberation by leaving fewer issues up to expertise or private choice. For instance. it should allow deliberation about the relevance of age, disability, social position, and psychological well-being to allocation decisions. Second, it should broaden both the set of costs considered and the set of stakeholders represented in the deliberative process. In particular, it (...) should consider efforts to reduce the cost of end-of-life care and to redirect resources away from the provision of costly interventions, and should expand the set of individuals included in deliberation to include stakeholders outside the health-care system. (shrink)

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader (...) implications for just and equitable healthcare delivery. (shrink)

The Disabilities Act of 1990 and the Developmental Disabilities Assistance and Bill of Rights Act of 2000 of United States in act to prevent social exclusion of people with intellectual and developmental disabilities (IDDs) and to cut back on unneeded expenditures to society. However, despite the protective legislation, the rights of adults with neurodevelopmental disorders have not yet been fully realised. There are several obstacles to overcome the neurological development related health care services, including health care usage, educational and career (...) pathways, family and social lives, self-fulfilment, and quality of life. There are significant gaps in the transition process that affect the health care systems. Lack of transition and transfer planning, neurodevelopmental disorder health care pathway services have lack of experience, education, and expertise which result the inadequate growth of the health care quality and create communication gap in between service providers and service users. The aim of this short communication is to mention and clarify the ethical concerns of neurodevelopmental service evaluation. (shrink)

Much disease and disability is the result of lifestyle behaviours. For example, the contribution of imprudence in the form of smoking, poor diet, sedentary lifestyle, and drug and alcohol abuse to ill-health is now well established. More importantly, some of the greatest challenges facing humanity as a whole – climate change, terrorism, global poverty, depletion of resources, abuse of children, overpopulation – are the result of human behaviour. In this chapter, we will explore the possibility of using advances in (...) the cognitive sciences to develop strategies to intentionally manipulate human motivation and behaviour. While our arguments apply also to improving prudential motivation and behaviour in relation to health, we will focus on the more controversial instance: the deliberate targeted use of biomedicine to improve moral motivation and behaviour. We do this because the challenge of improving human morality is arguably the most important issue facing humankind (Persson and Savulescu, forthcoming). We will ask whether using the knowledge from the biological and cognitive sciences to influence motivation and behaviour erodes autonomy and, if so, whether this makes it wrong. (shrink)

Estimates of the burden of disease assess the mortality and morbidity that affect a population by producing summary measures of health such as quality-adjusted life years and disability-adjusted life years. These measures typically do not include stillbirths among the negative health outcomes they count. Priority-setting decisions that rely on these measures are therefore likely to place little value on preventing the more than three million stillbirths that occur annually worldwide. In contrast, neonatal deaths, which occur in comparable numbers, have (...) a substantial impact on burden of disease estimates and are commonly seen as a pressing health concern. In this article we argue in favor of incorporating unintended fetal deaths that occur late in pregnancy into estimates of the burden of disease. Our argument is based on the similarity between late-term fetuses and newborn infants and the assumption that protecting newborns is important. We respond to four objections to counting stillbirths: that fetuses are not yet part of the population and so their deaths should not be included in measures of population health; that valuing the prevention of stillbirths will undermine women's reproductive rights; that including stillbirths implies that miscarriages should also be included; and that birth itself is in fact ethically significant. We conclude that our proposal is ethically preferable to current practice and, if adopted, is likely to lead to improved decisions about health spending. (shrink)

Assisted reproductive technologies have greatly increased our control over reproductive choices, leading some bioethicists to argue that we face unprecedented moral obligations towards progeny. Several models attempting to balance the principle of procreative autonomy with these obligations have been proposed. The least demanding is the minimal threshold model (MTM), according to which every reproductive choice is permissible, except creating children whose lives will not be worth living. Hence, as long as the future child is likely to have a life worth (...) living, prospective parents may be allowed to use preimplantation genetic diagnosis (PGD) to select embryos with genetic diseases or disabilities. Assuming a consequentialist person‐affecting view of morality, this paper investigates whether the MTM is an appropriate tool to guide procreative decisions given the continuous development of reproductive genetic technologies. In particular, I consider germline genome editing (GGE) and I argue that its application in human reproduction, unlike PGD, should be conceived as person‐affecting towards future progeny. I claim that even if we assume the plausibility of the MTM within PGD, we are committed to accepting that a greater moral obligation towards progeny should guide procreative decisions if GGE were available. In this case, the MTM should no longer be considered an appropriate instrument to guide procreative choices. Finally, I investigate when we face this greater moral obligation, concluding that it applies only when prospective parents have already engaged in the in vitro fertilization process. (shrink)

Cases of severe and enduring Anorexia Nervosa (SEAN) rightly raise a great deal of concern around assessing capacity to refuse treatment (including artificial feeding). Commentators worry that the Court of Protection in England & Wales strays perilously close to a presumption of incapacity in such cases (Cave and Tan 2017, 16), with some especially bold (one might even say reckless) observers suggesting that the ordinary presumption in favor of capacity ought to be reversed in such cases (Ip 2019). -/- Those (...) of us who worry that such trends and proposals amount to (or at least pose a serious threat of) wrongful discrimination on the grounds of disability nevertheless feel the pull of judging many SEAN service users to be incapacitous with respect to decisions regarding (perhaps amongst other things) treatments involving feeding, artificial or otherwise. But it is difficult to get to grips with exactly what their incapacity consists in. Many such service users seem able to understand, retain, use and weigh information, and express a decision (i.e. they seem, prima facie, to satisfy the ‘MacArthur’ criteria). At the very least, they do not, generally. (shrink)

Lack of physical activity is one of the main cause of obesity. Currently, scientists proposed that teenagers and women are overweight or obese than men in Bangladesh. Furthermore, non-communicable diseases (NCDs) are becoming more prevalent in Bangladesh. By 2050, the illness burden of non-communicable diseases will have a significant impact on the health budget. To reduce non-communicable diseases, physical activity is one of the options. However, the lack of public facilities for physical activities in each community is a concern. According (...) to the Department of Military Estate Administration, Central Circle, DOHS (Defense Officers' Housing Scheme) has a total of 2966 plots and 396.6327 acres of area (640 acres =1 square mile) including 5 DOSH in Bangladesh. However, each DOHS has all the public facilities including structures streets, parks, walking paths, squares, gyms, cultural and sports grounds, walkways, waterfronts, lakes, mosques, cafeterias, public toilets, sitting areas for elderly or passersby, etc for physical activities specially for women, children, and the disabled people. Gulshan, Baridhara, Banani, and Dhanmondi areas are other good examples from Bangladesh where dwellers specially, women and children have facilities for physical activities. Sangmoo Kim, urban specialist said, “it is not over-ambitious thinking to have public facilities; it is a basic need for each city dweller for a healthy life”. This report aims to explore what are the policy drawbacks of the Government of Bangladesh not providing public facilities to perform physical activities in each area. (shrink)

This chapter sets forth an interpretation of public reason that appeals to our central capabilities as human beings. I argue that appealing to central human capabilities and to the related idea of respect for threshold capabilities is the best way to understand public reason. My defense of this position advances stepwise: first, I consider a central alternative to a capability account, which regards public reason as a matter of contracting; next, I describe central concerns with contract views and show how (...) a capability view can avoid them; lastly, I consider extending public reason beyond national borders and test the two views in this context. (shrink)

Liminal Bodies, Reproductive Health, and Feminist Rhetoric presents composition professor Lydia McDermott's "sonogram" methodology of rhetorical listening, an exercise that discloses feminine voices muted or unjustly disciplined within texts ostensibly written on women's behalf. The texts examined by McDermott range from eighteenth-century pregnancy manuals to speeches by Favorinus, the ancient sophist, who is described from antiquity as a hermaphrodite. Part of McDermott's purpose in sonogramming is to critique modern and contemporary feminists. She objects to the feminist trend of perpetuating and (...) answering a "disability" rhetoric about women, or of demonstrating that women can overcome a... (shrink)

Eugenics is often referred to in debates on the ethics of reproductive technologies and practices, in relation to the creation of moral boundaries between acceptable and unacceptable technologies, and acceptable and unacceptable uses of these technologies. Historians have argued that twentieth century eugenics cannot be reduced to a uniform set of practices, and that no simple lessons can be drawn from this complex history. Some authors stress the similarities between past eugenics and present reproductive technologies and practices (what I define (...) throughout the paper as ‘the continuity view’) in order to condemn the latter. Others focus on the differences between past and present practices (what I define throughout the paper as ‘the discontinuity view’) in order to defend contemporary reproductive technologies. In this paper, I explore the meanings of the word ‘eugenics’ and the relationship between its past and present uses in terms of contemporary debates on reproductive technologies and practices. I argue that moral disagreement about present technologies originate in divergent views of condemnable and justifiable features of the past. (shrink)

Criminalisation of prostitution, and minority rights for disabled persons, are important contemporary political issues. The article examines their intersection by analysing the conditions and arguments for making a legal exception for disabled persons to a general prohibition against purchasing sexual services. It explores the badness of prostitution, focusing on and discussing the argument that prostitution harms prostitutes, considers forms of regulation and the arguments for and against with emphasis on a liberty-based objection to prohibition, and finally presents and analyses three (...) arguments for a legal exception, based on sexual rights, beneficence, and luck egalitarianism, respectively. It concludes that although the general case for and against criminalisation is complicated there is a good case for a legal exception. (shrink)

One challenge in providing an adequate definition of physical disability is unifying the heterogeneous bodily conditions that count as disabilities. We examine recent proposals by Elizabeth Barnes (2016), and Dana Howard and Sean Aas (2018), and show how this debate has reached an impasse. Barnes’ account struggles to deliver principled unification of the category of disability, whilst Howard and Aas’ account risks inappropriately sidelining the body. We argue that this impasse can be broken using a novel concept: marginalised (...) functioning. Marginalised functioning concerns the relationship between a person’s bodily capacities and their social world: specifically, their ability to function in line with the default norms about how people can typically physically function that influence the structuring of social space. We argue that attending to marginalised functioning allows us to develop, not one, but three different models of disability, all of which—whilst having different strengths and weaknesses—unify the category of disability without sidelining the body. (shrink)

What is it for something to be a disability? Elizabeth Barnes, focusing on physical disabilities, argues that disability is a social category. It depends on the rules undergirding the judgements of the disability rights movement. Barnes’ account may strike many as implausible. I articulate the unease, in the form of three worries about Barnes’ account. It does not fully explain why the disability rights movement is constituted in such a way that it only picks out paradigmatic (...) disability traits, nor why only the traits identified by the movement as constituting experiences of social and political constraint count as disability. It also leaves out the contribution of people other than disability activists, to the definition of disability. I develop Barnes’ account. On my account, a person is disabled if she is in some state which is constitutive of some constraint on her legitimate interests. This state must be the subject of legitimate medical interest and be picked out by the disability rights movement as among the traits for which they are seeking to promote progress and change. My account addresses the worries about Barnes’ account. It is also able to include all disabilities, rather than only physical ones. (shrink)