Perspectives in Biology and Medicine最新文献

This article explores three different comics by creators with brain tumors: Rick, written and drawn by Gordon Shaw; Going Remote, written by Adam Bessie and drawn by Peter Glanting; and Parenthesis, written and drawn by Élodie Durand. It examines how the affordances of the comics medium enables the creators to present an experience of subjective time that is multiple, diffuse, and contradictory, in contrast to the regular apportioning of time via calendars, schedules, and pathways essential to institutional neuro-oncology. The question of time here is significant because the side effects of brain tumors can include blackouts, seizures, and periods of extreme fatigue, during which the experience of time can be significantly disrupted. The title of the article therefore evokes a temporal duality: on the one hand, it refers to the common phrase used to describe what clocks do, as well as our ability to read them; on the other hand, it speaks to one of the most important qualities of graphic medicine, which is that it allows patients dealing with medical or health issues to tell time differently. The article explores the representation of personal time in Rick, social time in Going Remote, and lost time in Parenthesis.

History shows alarming shifts in the way that people with intellectual disabilities have been regarded. Locke doubted whether they could be counted among the human, while Rousseau hailed them as unspoiled children who could help us be better; the eugenicists despised them as perpetuating "feeble-mindedness," while the religious praised them as holy innocents. Throughout, however, they have been seen metaphorically, as symbolic figures who incite hatred or inspire wonder, but rarely as real people. This article, written by the father of a young man with severe disabilities, rejects such thinking. The author explains how intellectual disabilities work as a Brechtian "alienation effect" and challenge our core system of values and explores how they make us reconsider much of what we take for granted.

With reference to imagery from Matthias Grünewald's masterpiece, the Isenheim Altarpiece, this essay considers how health-care practitioners especially- but all of us in practice-can learn to wonder in a way that does not objectify the differently abled but instead honors them. Wondering at the images in Grünewald's work requires humility, curiosity, patience, compassion, and grit-virtues that all health-care professionals would do well to cultivate.

This paper examines the concept and moral significance of "childhood interests." This concept is important in medical decision-making for children and more broadly in the field of pediatric ethics. The authors argue that childhood interests are identifiable components of childhood well-being that carry moral weight. Parents have a special role in protecting and promoting these interests and special obligations to do so. These parental obligations are grounded by the independent interests of the child, as well as the good of society more generally. Because parents have these child-rearing obligations, they must also have the authority and wide discretion necessary to fulfill them. However, while parental discretion is wide, it is not unlimited, for it must be used to safeguard and advance childhood interests.

This article describes the process engaged by 17 expert scholars in the development of a set of six consensus recommendations about the normative foundations of pediatric decision-making. The process began with a robust pre-reading assignment, followed by three days of in-person symposium discussions that resulted in a publication in Pediatrics entitled "Pediatric Decision-Making: Consensus Recommendations" (Salter et al. 2023). This article next compares the six recommendations to existing statements about pediatric decision-making (specifically those developed by the American Academy of Pediatrics), highlighting similarities and differences. Finally, the article discusses the value of finding consensus in the field of pediatric bioethics.

This essay reflects on occasions when images of the author's body stirred wonder and challenged the author's understanding of her relationship to her body. Wonder is not a sentimental or romantic feeling, but an intermingling of both admiration and fear. Wonder is perhaps closest to awe, which has connotations of both reverence and terror. Wonder holds together both the negative and positive emotions that awe once elicited. Finding wonder in your own body, therefore, can be both a fearful and exhilarating experience, one that demands a kind of reconstitution of the self, since the body that was once taken for granted has now become alien.

"First, do no harm" has been cited so often as the fundamental principle of medical ethics that the entailed harm appears self-evident: intentional or unintentional physical harm. This article makes a case for a different kind of harm that physicians can commit against patients: metaphysically harming them by reducing them to mere objects to be fixed or manipulated, instead of persons to be known. Drawing on the history of medicine, theological reflection, and clinical practice, the author compares two ways of regarding the patient: (1) the medical dissective gaze, which knows the patient by mentally cutting her up and reducing her into parts; and (2) iconic perception, which encounters the patient as a living icon. While the medical dissective gaze describes an important dimension to scientific medicine, treating a patient purely as a medical object defaces her human personhood. To address and prevent these kinds of harms, the author proposes that regarding the patient with iconic perception fosters wonder and reaffirms the patient's humanity.

This essay examines the concept of "wonder" in relation to the life of deafblind author and activist Helen Keller (1880-1968), who was often billed in popular media as the "Eighth Wonder of the World." For Keller, being known as a "wonder" was not always a positive attribute: the term, far from being neutral, conceals the uneven power dynamic between the one doing the wondering and the one who inspires the wonder. Using excerpts from a range of sources-from Keller's second autobiography The World I Live in (1908) to hotelier Conrad Hilton's autobiography Be My Guest (1957)-the author argues that Keller was never a passive object of other people's wonder but a proactive agent of her own wonder-making. In the end, Keller endured the burden of being known as the "Eighth Wonder" while also resisting its cumulative effects.

Pediatric intervention principles help clinicians and health-care institutions determine appropriate responses when parents' medical decisions place children at risk. Several intervention principles have been proposed and defended in the pediatric ethics literature. These principles may appear to provide conflicting guidance, but much of that conflict is superficial. First, seemingly different pediatric intervention principles sometimes converge on the same guidance. Second, these principles often aim to solve different problems in pediatrics or to operate in different background conditions. The potential for convergence between intervention principles-or at least an absence of conflict between them-matters for both the theory and practice of pediatric ethics. This article builds on the recent work of a diverse group of pediatric ethicists tasked with identifying consensus guidelines for pediatric decision-making.