In the helpful article “Why Bioethics Needs a Disability Moral Psychology,” Joseph Stramondo adds to the critique of actually existing bioethics and explains why disability activists and scholars so often find fault with the arguments of bioethicists. He is careful not to stereotype either community—rightly, given that bioethicists endorse positions as disparate as utilitarianism, deontology, virtue ethics, and feminist ethics, among others. Although Stramondo never explicitly mentions utilitarians or liberals, it seems probable that these are the main targets of his (...) discontent. The disability community, as he concedes, is also a broad church. Yet for this reason, I do not believe that you can read off positions on bioethics questions from either disability embodiment or disability organization affiliation. (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)

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)

Human rights have increasingly been put forward as an important framework for bioethics. In this paper, it is argued that human rights offer a potentially fruitful approach to understanding the notion of Respect for Persons in bioethics. The idea that we are owed a certain kind of respect as persons is relatively common, but also quite often understood in terms of respecting people’s autonomous choices. Such accounts do however risk being too narrow, reducing some human beings to a second-class moral (...) status. This paper puts forward a political approach to our standing as persons and a strongly pluralistic account of human rights that lays the ground for a more broadly applicable conception of Respect for Persons. It is further argued that this model also provides an example of a more general approach to philosophical ethics, an approach which is here called taxonomical pluralism. When it comes to Respect for Persons specifically, this principle is developed in terms of five distinct core concerns. (shrink)

As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and reduced surgical (...) risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. (shrink)

Christians have an obligation to attend to the voices of persons who are crying out that their dignity and very lives are in jeopardy when physician-assisted suicide becomes legalized. The following essay begins with an account of the concept of “disability moral psychology,” which elucidates the unique ways persons with disabilities perceive the world, based on their phenomenological experience. The author then explores the disability critique of PAS and the shared social conditions of persons who are chronically disabled and terminally (...) ill. Finally, the author positions the disability critique within Christian moral deliberations on PAS to unearth its significance for Christian ethics. To bear witness to a compassionate God, theological and ethical judgments concerning PAS must seek perspectives from persons who claim that their dignity and even their lives are in jeopardy by the practice. (shrink)

Robert Veatch’s The Foundations of Justice: Why the Retarded and the Rest of Us Have Claims to Equality delves into deep questions of justice through the case of a child with disabilities. I describe what is basically right about this vision, as well as what is problematic from the standpoint of contemporary disability bioethics. From there, I dive into the notion of vulnerability that is at play in his work. He describes disability as necessarily a condition of weakness, lesser-than existence, (...) and neediness. When disability is viewed in this way as an inherently vulnerable state of being, the essential sociopolitical dimensions of disability receive inadequate attention, which, in turn, makes it impossible to identify injustices correctly. I connect these points to concrete challenges faced by disability communities during the COVID-19 pandemic, which have raised profound questions about the just use of scarce critical care resources. Any case drawn from the pandemic is a very different kind of case than that of the child in Veatch’s book, but a commonality is the question of who should get what limited resources when needs and urgency vary. (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)

In this paper, I discuss the bioethical principle of justice and the bioethical key concept of vulnerability, in a queer feminist posthuman framework. I situate these contemplations, philosophical by nature, in the context of antimicrobial resistance (AMR), one the most vicious moral problems of our time. Further, I discuss how gender and sexual variance, vulnerability and justice manifest in AMR. I conclude by considering my queer feminist posthuman framework for vulnerability and justice in relation to the notion of antibiotic vulnerabilities, (...) suggesting a lacuna for further AMR research. (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)

In this paper, the authors explore the question of whether cognitive enhancement via direct neurostimulation, such as through deep brain stimulation, could be reasonably characterized as a form of transformative experience. This question is inspired by a qualitative study being conducted with people at risk of developing dementia and in intimate relationships with people living with dementia (PLWD). They apply L.A. Paul’s work on transformative experience to the question of cognitive enhancement and explore potential limitations on the kind of claims (...) that can legitimately be made about individual well-being and flourishing, as well as limit the kind of empirical work—including the authors’ own—that can hope to enlighten ethical discourse. In this paper, the authors advance the following theses: (1) it is sometimes reasonable to characterize cognitive enhancement as a transformative experience; (2) the testimonies of people intimately acquainted with dementia may still be relevant to evaluating cognitive enhancement even though cognitive enhancement may be a transformative experience; and (3) qualitative studies may still be useful in the ethical analysis of cognitive enhancement, but special attention may need to be given to how these are conducted and what kind of insights can be drawn from them. (shrink)

It is sometimes argued that medical professionals should protect a future child's rights by prohibiting disabled parents from using technology to deliberately have a disabled child because disability is taken as an inevitable, severe threat to a child's otherwise “open” future. I will first argue that the open future that allegedly protects a child's future autonomy is precluded by the very conditions needed to develop that future autonomy. Any child's future will be narrowed as they are socialized in a way (...) that gives them the capacity for autonomous choice. However, oppressive master narratives can diminish a future child's autonomy by distorting their narrative identity and constricting their agency. In fact, the open future argument does just this by advancing one of the most damaging master narratives about disability: that disability inevitably and severely restricts a person's autonomy and closes their future. (shrink)

An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for (...) and to matter to others since these constitute an essential aspect of being human. (shrink)

Autonomy and consent have been central values in Western moral and political thought for centuries. One way of understanding the bioethical models that started to develop, especially in the 1970s, is that they were about the fusion of a long-standing professional ethics with the core values underpinning modern political institutions. That there was a need for this kind of fusion is difficult to dispute, especially since the provision of health care has in most developed countries become an ever more important (...) concern of our political institutions, with governments playing a significant role in regulating and facilitating the provision of health care and in many countries even largely organizing it. There is, nevertheless, still room for dispute about how best to achieve this fusion and how to best think about autonomy and consent in a biomedical context. The simplest model we can have is probably about how being a person is largely about having the capacity of autonomous choice and that the main mode through which we exercise autonomy is by providing informed consent. Yet, liberal democracy's core idea that human beings have a high and equal value is also found in other accounts of the person. The human-rights framework provides an alternative model for thinking about personhood and about patient care. The human-rights approach is grounded, not in an account of autonomy, but in an account of the moral and political personhood that people possess merely by being human beings. In this approach, values like dignity and integrity, both highly relevant in a bioethical context, are identified as distinct values rather than being derived from and therefore reduced to respect for autonomous choice. The human-rights approach can supplement the problematic notion of autonomy that has been central to bioethics by placing this notion in a broader, strongly pluralistic framework. (shrink)

In “Bioethics and the Moral Authority of Experience,” Nelson et al. explore what they refer to as “The Paradox of Experience.” The authors characterize this paradox formally as follows:(A) Personal...

Bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. At the same time, there is growing recognition within bioethics that nonideal theory can play an important role in formulating normative recommendations. In this chapter we discuss what this shift toward nonideal theory means for ethical curricula (...) within healthcare education. In particular, we contend that more attention to the particularities of historical and social context needs to be incorporated into bioethics training. To make this argument, we focus on two examples: teaching units on race and medicine and those that focus on stigma and coercion in mental health. For both, we show how a pedagogical approach in which educators focus on social injustice could influence how practitioners engage in ethics in the clinic. This chapter, then, demonstrates what a commitment to nonideal theory can mean practically when it comes to bioethics education. (shrink)

The rapidly expanding aging population presents an urgent global challenge cutting through just about every dimension of worldly life, including the social, political, cultural, and economic. Developing innovations in health and assistive technology (AT) are poised to support effective and sustainable health care in the face of this challenge, yet there is scant (but growing) discussion of the ethical issues surrounding AT for older persons with dementia. Demands for ethical frameworks that can respond to frontline dilemmas regarding AT development and (...) provision, and how the needs of aging persons themselves are defined throughout this development process, are increasing. This article suggests that fulfilling the promises of AT to provide effective and ethically informed solutions may demand shifting away from standard bioethical analyses that centralize the principle of respect for autonomy. An autonomy-centric paradigm is dubiously equipped to theorize the foundational ethical issues in dementia care and to effectively guide AT development and implementation. An agency-centered approach to dementia care, which could engage more adaptively with the perspectives and choices of older persons themselves while offering strong support to AT research and stakeholders, may offer an attractive alternative. (shrink)

In the target article, Porsdam Mann and colleagues (2023) broadly survey the ethical opportunities and risks of using general and personalized large language models (LLMs) to generate academic pros...