Joel Michael Reynolds

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.

Drawing upon the life and work of S. Kay Toombs, I explore the impact and import of phenomenological accounts of disability for the existentialist tradition. Through the case of multiple sclerosis, a noncongenital, late-onset, and degenerative disability, I show how the general structures that emerge from its lived experience largely support a mere-difference view of disability and highlight the need for an equitably habitable world. I further argue that phenomenological accounts of disability demonstrate accessibility to be the defining feature of what it means to be embodied as we are. I conclude with a discussion of the more general philosophical relationship between disability, embodiment, and existentialism.

Insofar as many older adults fit some definition of disability, disability studies and gerontology would seem to have common interests and goals. However, there has been little discussion between these fields. The aim of this paper is to open up the insights of disability studies as well as philosophy of disability to discussions in gerontology. In doing so, I hope to contribute to thinking about the good life in late life by more critically reflecting upon the meaning of the body, ability, and the variability of each. My central argument is that we should conceptualize age‐associated bodily variations and abilities not in terms of individual capacity, but in terms of what I call “the extended body.” It is in light of the meaning of embodiment and ability in general that we must think differently and more capaciously about the meaning of late life in particular.

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.

Responding to Danaher et al. on self-tracking technologies, I argue that human lived experience is becoming increasingly mediated by generalized, statistical information, which I term our "infotality." Drawing on the work of Foucault, I argue that infotality is historically novel and best understood as the product of biopolitics, healthism, and informatics. I then critique the authors' "stance of cautious openness,” which misunderstands the aims of the technology in question and the fundamental ambiguity of the role information plays in the achievement of human wellbeing. Self-tracking technologies are not primarily designed to change behavior; they are designed to create and sustain the desire for their use. I conclude by suggesting that infotality names a new way to fall for an old ruse: the promise that more information means more wellbeing.

The guiding premise from which this special report begins is the conviction and hope that justice is at the normative heart of medicine and that it is the perpetual task of bioethics to bring concerns of justice to bear on medical practice. On such an account, justice is medicine's lifeblood, that by which it contributes to life as opposed to diminishing it. It is in this larger, historical, intersectional, critical, and ethically minded context that we must approach pressing questions facing medicine, including the question of the import and role of genomic knowledge for human life. The second premise is that, at least in principle, the knowledge generated by genomics can be a gift or a weight, or both at the same time. That is to say that, on the one hand, genomic knowledge is a gift, creating novel insights into the genetic drivers of disease and into the geographical paths of our ancestors. And on the other hand, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance. Because it is in many ways the “common sense” of the day that genomic knowledge is a gift, this special report, which contains nine essays, concentrates on the ways in which such knowledge can be a weight, a weight that has the potential to thwart—and historically has thwarted—medicine from genuinely advancing justice .

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.

[Excerpt]: Bioethics has an uneasy relationship with embodiment. Only with vigilance does knowledge of the body as it is lived counterbalance the momentous inertia of knowledge of the body as an object brought about by modern medical sciences. As a field tethered to detached, technical ways of knowing the world, bioethics must toil to treat the body as more than mere material and machine. To be more is, among other things, to be social—to live in the thickets of interdependence and the institutions and practices we build, hone, and defend to facilitate it. I take this tension to define the ultimate stakes of Melinda Hall's The Bioethics of Enhancement: Transhumanism, Disability, and Biopolitics. Hall homes in on transhumanism, the idea that we should embrace technology to vault beyond current human limitations. Yet the work serves as a reminder for all bioethicists and philosophers of how easily one can be led astray by otherwise irreproachable values when they are disconnected from the conditions and realities of human life, including being irremediably interdependent embodied beings. Put more acerbically, the book is a reminder of how thinking goes wrong when divorced from the principal sources out of which human appraisals emerge: our fleshy, messy, social bodies.

In this paper, I argue that clinically-oriented practical and theoretical approaches to the problem of pain should more carefully heed narrative and phenomenological research. I begin with the work of S. Kay Toombs, contending that her phenomenological account of multiple sclerosis demonstrates how a degenerative condition attendant with pain ultimately effect a constriction of one’s world. Drawing upon two of artist Yosl Bergner’s depictions of the story, I then present a reading of Kafka’s “The Vulture” as a literary account of the constrictive movement of acute, localized pain to chronic, systemic pain. I conclude by discussing the implications of literary and phenomenological accounts of pain for its diagnosis, management, and treatment.

[Excerpt]: In the nonideal world against which philosophical ideas and ideals are tried, suffering is distributed unequally. A central, if not defining, question for many late-twentieth-century feminist ethicists is how and why so many forms of suffering are distributed by virtue of bodily difference. For over four decades, disability studies, a multidisciplinary field spanning the humanities and social sciences, has principally revolved around a basic question: is the concept of "disability" constructed like "race," "gender," or "sexuality"? In other words, is it as much a construct as any category historically deployed to justify socially produced sufferings, inequities, and hierarchies and to disenfranchise, stigmatize, and...

[Excerpt]: German philosopher Martin Heidegger argued that humans are defined by care. The term he used, “Sorge,” picks out a wide range of caring relations, including sorrow, worry, the making of arrangements, and even fending for another. Since coming to The Hastings Center, I've been struck by the genuine care definitive of its scholars’ relationship to their work. Care about newborns, the elderly, and nonhuman animals. Care about doctors, nurses, and health care institutions. Care expressed in the panoply of ways biomedical knowledge and practices inform our havings, doings, and beings in the world. Perhaps in its better moments, bioethics just is care work.

Given its subject matter, biological psychiatry is uniquely poised to lead STEM DEI initiatives related to disability. Drawing on literatures in science, philosophy, psychiatry, and disability studies, we outline how that leadership might be undertaken. We first review existing opportunities for the advancement of DEI in biological psychiatry around axes of gender and race. We then explore the expansion of biological psychiatry’s DEI efforts to disability, especially along the lines of representation and access, community accountability, first person testimony, and revised theoretical frameworks for pathology. We close with concrete recommendations for scholarship and practice going forward. By tackling head-on the challenge of disability inclusion, biological psychiatry has the opportunity to be a force of transformation in the biological sciences and beyond.