Perspectives in Biology and Medicine最新文献

The consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making intentionally omitted adolescents due to the additional complexity their evolving autonomy presented. Using two case studies, one focused on truth-telling and disclosure and one focused on treatment refusal, this article examines medical decision-making with and for adolescents in the context of the six consensus recommendations. It concludes that the consensus recommendations could reasonably apply to older children.

Wonder is a gateway, not a machine. It is not something that can be functionalized for the purposes of education, moral uplift, or humanizing medicine. The things and experiences that evoke wonder today have their own history. Inhabitants of the Western developed world, for instance, have been taught to wonder at the power of science to control nature and at the ingenuity of the scientists and technicians who have invented the techniques of science and technology. This article examines what wonder tells us about our grasp of the human, and also why the language of wonder sometimes jars within the constraints of modern, liberal, scientifically inclined public discourse. The author suggests that privileging wonder at the appearance of the nonstandard human body is important for the lives of disabled people and also as a corrective force to ensure that the form of wonder that dominates the modern developed West-wonder at our own powers of scientific description and medical remaking of the human-not become inhumane.

Wonder exalts its object. Can it also degrade? This question was a central interpretive tension guiding the author's archival research and analysis when he set out to write his first book almost 30 years ago, about a 19th-century woman who was simultaneously degraded-for her race, her disability, her old age, and her enslavement-and lionized for the stories she had to tell and for the symbolism of her very existence. The author reflects on how his fascination with the story he was recovering in the archives reflected his "positionality," or the ways in which his social identity shaped his understanding. A reading of a recent collection of poems by Bettina Judd reimagining the same story helped clarify both what his own standpoint allowed him to see, and what he missed.

This first-person essay explores wonder in the medical encounter from a patient's point of view, considering times when medical technology has given the author insight into her body and the wonder that has been evoked by these experiences. Two medical encounters are detailed: one in which post-polio vocal cord weakness was explored using a miniature camera, which evoked a sense of wonder at the process of evolution; and the second in which an MRI of the author's skull became a memento mori. The author reflects on the long processes of genetic mutation from single-celled organism to human being, and on the devolution after death to food for bacteria and insects.

Recently published consensus recommendations on pediatric decision-making by Salter and colleagues (2023) did not address neonatal decision-making, due to the unique complexities of neonatal care. This essay explores three areas that impact neonatal decision-making: legal and policy considerations, rapid technological advancement, and the unique emotional burdens faced by parents and clinicians during the medical care of neonates. The authors evaluate the six consensus recommendations related to these considerations and conclude that the consensus recommendations apply to neonates.

This article examines how parents should make health decisions for one child when they may have a negative impact on the health interests or other interests of their siblings. The authors discuss three health decisions made by the parents of Alex Jones, a child with developmental disabilities with two older neurotypical siblings over the course of eight years. First, Alex's parents must decide whether to conduct sequencing on his siblings to help determine if there is a genetic cause for Alex's developmental disabilities. Second, Alex's parents must decide whether to move to another town to maximize the therapy options for Alex. Third, Alex's parents must decide whether to authorize the collection of stem cells from Alex for a bone marrow transplant for his sibling who developed leukemia. We examine whether the consensus recommendations by Salter and colleagues (2023) regarding pediatric decision-making apply in families with more than one child.

The concepts currently operating in much medical microbiome research bear a curious resemblance to an ancient tradition of Western medicine. This tradition, humoral medicine, is concerned with the four humors: yellow and black bile, phlegm, blood. Both humoral medicine and medical microbiome research use notions of imbalance and balance for broad explanations of disease and health. Both traditions also hold that the composition of humors or microbiomes determines bodily as well as mental states. Causality in each system is often conceived teleologically, meaning that humors or microbiomes "function for" the maintenance of the whole. And ultimately, each framework situates the humors or microbiomes in a multilevel interactionist theory that conceptualizes individual health within a broader environmental context. As well as critically assessing the parallels between these systems, this article sketches some explanations of how they may have arisen. The authors also evaluate the implications of these similarities for the future of medical microbiome research and suggest ways in which the field might move forward.

Legislation banning gender-affirming medical care (GAMC) for minors is inconsistent with the Consensus Recommendations for Pediatric Decision-Making (Salter et al. 2023). Gender dysphoria is a medical condition, and GAMC promotes adolescents' health interests. The evidence for GAMC is comparable to the evidence for other types of pediatric medical care. Parents are permitted to consent for similar risks in the treatment of other conditions. Evaluation of the potential benefits, risks, and treatment alternatives is contingent on individual patients' clinical conditions and adolescents' and their parents' values and preferences. Such decisions are within the scope of parental discretion and should be made through shared decision-making with health-care providers. Parents' declining GAMC does not inherently create a significant risk of serious imminent harm required to justify state intervention. Usurping parental discretion for GAMC is unjust: it treats this medical care differently than other comparable types of medical care without sufficient justification.

While the proliferation of diversity, equity, and inclusion (DEI) initiatives among medical schools and residency training programs has provided important benefits of demographic and experiential diversity among medical trainees, there has not been a similar emphasis upon the importance of moral diversity in medical training. Enhanced attention to the importance of moral diversity and the centrality of conscience to medical practice might allow trainees to better interface with the morally diverse patients they serve, learn important virtues like humility, patience, and tolerance, and deepen their understanding of and appreciation for alternative moral viewpoints among their fellow practitioners.