Perspectives in Biology and Medicine最新文献

In summer 2022, six points of consensus emerged from a symposium addressing the question, "In the context of U.S. pediatric care, what moral precepts ought to guide parents and clinicians in medical decision making for children?" (Salter et al. 2023). The authors of this statement wrote, however, that the points of consensus may require modification or may not apply in their entirety to children in state custody. This article addresses the consensus recommendations in the context of the thousands of children removed annually from the custody of their parents. While the consensus statements developed at the symposium provide a good starting point for decision-making in the context of these children, some alterations and nuance must be applied to attend to the specific needs of this population. The article works through what special considerations and changes ought to be made to expand the reach of the original points of consensus without neglecting the particular conditions of children in state custody, as well as their parents and caregivers.

This essay is an exploration of the transformative possibilities open to us through aging. Transformative openings are described using psychologist Abraham Maslow's notion of "peak-experiences," which are both normal and common for humans. Popular cultural stereotypes of aging are examined and discarded. The experiences of loss, especially diminishments of mobility, dexterity, and mental acuity, are characteristic of aging. It is argued that these losses present novel transformative openings, especially when death and aging are viewed in dialectical relationship.

In her landmark volume Freakery: Cultural Spectacles of the Extraordinary Body, Rosemarie Garland-Thomson argues that the Enlightenment heralded a striking change in the way European and American thinkers conceptualized disability-away from earlier notions of disability as a marvel or wonder, toward a discourse of normalcy and deviance that framed disability as an aberration. Might returning to wonder offer us a path to approach disability differently? This article probes two risks: the way treating disabled people as wondrous can be used to objectify, turning disabled bodies into sites that matter because they spark feeling in others; and the way a call to experience wonder can figure certain feelings or modes of perception as prerequisites for a meaningful life. Considering the way that disabled writers narrate our own experience showcases wonder's possibilities: new orientations toward beauty, care, interdependence, and a sensuous engagement with the complex present of disabled people's lives.

Leonard Norman Primiano (1957-2021), esteemed folklorist and ethnographer of religion, relied for 16 years on assistive technology to speak. Described by an anonymous reviewer as "our ever-vanguard of thought, work, and ethics, not to mention creativity, funkiness, and joy," Primiano brought a reverential delight to his vocation and inspired a reverential delight in return. This essay reflects on Primiano as a radiant example of the capacity for wonder.

Ethics theory is highly valued to the point that some commentators have claimed that it has taken on a life of its own, with too much focus on the justification of moral judgment and not enough on the needs of users of such theory. Building from various personal experiences of interdisciplinary ethics collaborative developments and empirical research projects, the wisdom gleaned by others, as well as insights from pragmatist theory, this article offers five (non-exhaustive) expectations for ethics theory from the standpoint of a user. The article is intended to prompt broad reflection on expectations toward ethics theory and why user perspectives should be considered early in the development of ethics scholarship.

The author invites us to accompany her from sun up to sun down as she shares the routines that create a sustaining environment for her family. She describes the assistive devices, modifications to her home and vehicle, and the strong care network that enable her to mother, and to celebrate the wonder of living and thriving with her daughter.

This article examines three debates over the nature of human specimens: anatomical dissection in Victorian Britain, the question of ownership over Henrietta Lacks's cells, and recent debates over how to treat remnants of abortion. These cases reveal that specimens are deeply connected to human persons and should be considered with a particular kind of care. The author uses Andrew Solomon's concept of horizontal kinship to support reframing medical waste as "relics"-objects of veneration interpreted as revealing truth about the human experience. Envisioning medical waste as relics allows us to wonder at the ability of the body to provide transformative knowledge, which leads to practices of appreciation to honor the sacrifices of the body.

This essay explores the relationship between the modern era's impulse toward control and the practices of family planning and disability-selective abortion. Drawing from experiences as a pediatric palliative care physician working within a busy fetal care program, as well as the social theory of sociologist Hartmut Rosa, the author argues that there is an unresolved cultural and professional conflict within perinatal medicine between maximizing control of the future and maximizing a culture of anti-ableism.

The hospital gown is a particularly charged article of clothing. For the chronically ill and disabled, the ritual of donning the gown signals a change of identity from "person" to "patient." This essay chronicles the metamorphosis of a standard hospital gown into a work of wearable art that showcases the glittering pregnant body. Rather than thinly shrouding nakedness, this gown reveals the nude, gravid, and disabled figure as not only worthy of artistic concentration, but full of wonder and enchantment. This work emerges from the author's decade-long collaborative practice with her sister, Devan Stahl, as her experiences living under the medical gaze are compounded in the pursuit of motherhood. The Imaging Gown takes up past and present visual cultures of medicine and re-presents them with sublime sensibilities that affirm the patient perspective.