Perspectives in Biology and Medicine最新文献

Precision medicine functions by grouping patients along genetic, molecular, and related "-omics" factors. This stratification relies on large, growing databases of patient-volunteered information. Both private companies and government bodies incentivize patients to volunteer this genetic information by appealing to the creation of collaborative "patient partnerships" and the concept of empowerment. This article addresses two related questions: (1) what is the actual nature of patient participation in precision medicine research? and (2) is this participation really that empowering for the average patient? The author contends that the nature of this participation is best conceived of as merely contributory, which falls short of collaboration. Participation in precision medicine research does not entail sharing values, equal say in decisions, or shared benefit. The author also contends that there are important caveats to claims that patient participation in precision medicine is empowering. Empowerment is hindered by the type of participation, the practical use or actionability of genetic data, genetic literacy, the cost of precision drugs for patients that qualify for them, and bioethical considerations of informed consent.

In recent decades, drug shortages have become more common and more impactful, and this has been particularly true in the field of pediatric oncology. This article provides a brief history of drug shortages, paying particular attention to shortages of critical cancer drugs. It gives background as to why this is such a vexing problem for hospitals and health-care organizations and how shortages often affect different institutions in different ways and similarly at the patient level. The authors provide specific examples of recent experiences with local, regional, and national collaborative efforts to navigate pediatric oncology drug shortages, identifying some of the successes of these groups, as well as their shortcomings, in achieving greater health-care justice. The article closes with reflections about the current state of affairs in childhood cancer drug shortages, identifying several areas that require further work and scholarship.

Over millennia, epidemics have wielded as much sway over human affairs as have wars, economic crises, and political upheavals. Devastating epidemics in the past have changed the course of history. This article focuses on the yellow fever epidemic of 1802 in St. Domingue to demonstrate how science has deepened our understanding of the epidemic, and hence of the Haitian Revolution. Genetics, affirming epidemiology, demonstrated that the origin of the virus was in Africa, and genomics demonstrated that the vector of yellow fever, the Aedes aegypti mosquito, evolved in the context of the ecological creation of the Sahara and the Sahel. The vector fed on humans and reproduced in man-made water containers, allowing transport to the Caribbean during the African slave trade. Serological studies in Africa later demonstrated that many African-origin slaves would have had adaptive immunity. French fighters did not, and they were decimated. The French withdrew, Haiti was created, and the Louisiana Purchase was executed.

Calls for political advocacy as essential to the medical professional mission have grown more frequent and insistent in the United States in the past 15 years. The author offers reasons why these calls should be resisted and a tentative diagnosis of the recent rise in their frequency. Especially in the past five years, professionals of many callings have embraced politics in their work. The author suggests that this embrace exhibits a utopian political moralism that has recently displaced a 20th-century "small-l liberalism" consensus among American professionals. While this moralism has provided a strong impetus for infusing politics into professionalism, it has not improved the cogency of arguments in favor of that course: arguments that professional politics are demanded by a social contract, by clinical ethics, by professional requirements to further population health, or by the alleged fact that "everything is political." Practical disadvantages of making politics part of the medical profession's identity include a continued decline in public trust and respect for the American medical profession.

This essay explores ethical challenges that frequently arise during discharge planning in acute-care and post-acute settings, often involving older adults with continuing care needs, with attention to organizational duties concerning family caregivers. Drawing on bioethics scholarship, empirical data, and their personal experiences and observations, the authors analyze a common set of burdens that a health-care organization will expect to hand off to a family caregiver as part of the discharge process. These burdens are co-produced by a patient's illness, clinical decision-making processes, the limits of public and private health insurers, and collective failures of imagination concerning how the care needs of aging societies can be met more fairly. The essay aims to be of practical use to professionals involved in discharge planning, in health-care ethics, or in executive-level decisions about organizational investments benefiting communities. It includes a set of recommendations premised on caregiver support as an ethical principle for health-care organizations.

Washington state's plans for a public health response to a pandemic or natural disaster were largely untested prior to the COVID-19 pandemic. Individual institutions were unprepared for a crisis of the scale and severity of the pandemic, and they faced a myriad of ethical questions that required expertise and experience. The pandemic also revealed the fundamental need for local, state, and regional collaboration during times of resource scarcity. As individual institutions scrambled to organize and implement strategies for dealing with scarcity in a way that was both effective and fair, the lack of a regional or national system to organize those efforts impaired a timely response and resulted in duplicated efforts and differing approaches. This article describes the authors' pediatric institutional response to the pandemic within the context of a broader cooperative statewide approach. The authors explain the rationale for starting with a utilitarian framework and the ways in which its shortcomings were addressed. The structures and approaches described continue to be utilized and modified for other situations that lead to resource scarcity of all kinds. Although changes at the national level to create a national response would be ideal, collaboration and investment at the state and regional level is both critical and pragmatic in ensuring that all patients can access the health care they need.

Despite growing interest in addressing health disparities in the US and around the world, excellence in US health care is largely defined by research dollars, innovation, and perceived prestige. This essay reimagines "excellence" in health care by exploring two different models that center care for the poor and vulnerable: the ancient example of the first hospital, founded by St. Basil of Caesarea in the fourth century, and the contemporary witness of Paul Farmer's liberation theology-inspired work of accompaniment. This renewed vision invites both social and personal transformation, offering health-care institutions and practitioners new ways of naming and pursuing excellence in academic medicine and surgery.

This essay introduces a new way to connect biological explanations of illness with patient experience using counterfactual reasoning. Building on Boorse's theory of disease and phenomenology, the author offers a two-level diagnostic model. At the objective level, clinicians use counterfactuals to understand causes. At the subjective level, patients describe their illness by imagining what their life would be like if they weren't sick. By showing that both clinicians and patients use "what-if" thinking-though in different ways-the model suggests a shared logical structure between clinical evidence and personal experience. This method keeps diagnosis evidence-based while also taking the patient's story seriously. The result is an approach that may help address both the biological causes and the life changes illness brings and provide tools for a more thoughtful and patient-centered approach to diagnosis.

This article examines the lived experiences of ADHDers with respect to time perception, through the lens of a neuroqueer temporality framework and its representation in graphic medicine. By close-reading autobiographical comics digitally posted by Pina Varnel (ADHD Alien), Dani Donovan, Heidi Burton, and Cecil, the article studies key elements of ADHD time perception, including time blindness, the now/not now dichotomy, the waiting mode, and the state of hyperfocus. ADHDers' perception of time is nonlinear and present-oriented, diverging from neuronormative temporal expectations. In visualizing the nuanced differences in temporal perception and their impact on ADHD self, the article contributes to the discussion of diverse ways of perceiving and interacting with the world. By recognizing these differences, the article aligns with the neurodiversity paradigm and calls for understanding ADHD as a way of being, breaking the vicious cycle of moral judgments and assumptions of intentionality on the basis of invisible but legitimate differences in temporal perception.

Much has been written about how poetry can be of use to medicine and medical education, privileging an instrumental perspective. But what might medicine contribute to poetry, beyond "subject matter"? Through enactive metaphors specific to medicine, medicine can bring body to words, and specific context to abstractions. But medicine and poetry are co-embroiled in life itself. This article first discusses the instrumentalism governing the use of poetry in medical education. Then it uses metaphor theory and the Kristevan concept of translationality to consider what medicine can do for poetry. Finally, the article considers the complex exchange between poetry and medicine in professional and educative contexts, illustrating these ideas through an examination of the uses of poetry in the first year of publication of the Canadian Medical Association Journal.