The current concern with reforming and regulating managed care under the general rubric of “patients' rights” has eclipsed the more fundamental need to legislate the human rights of those without adequate access to any healthcare. To characterize the regulatory activity as a “rights” movement inflates its moral dimension. The concept of “rights” carries a serious and powerful moral force that is currently inappropriately applied to the parochial concerns of a segment of the population privileged to have health insurance coverage. By (...) contrast, the language of “rights” refers to a high level of universality for the most rudimentary of human concerns. If there was a universal right to become a patient equal to other patients, a concept of patients' rights would have legitimacy. As it is, however, the central determinant of this “right” is how much the insurance policy costs and what is covered. To so diminish the meaning of “right” within the miasma of managed care is to lose sight of the real possibilities of applying a positive “right” to healthcare and, in the long run, is to diminish the ethics of healthcare. (shrink)

Has the private body of biethics become a microcosm of the body politic? Politics is ethics writ large. Ethics is politics writ small. However we turn it, the practice of bioethics is increasingly attuned to developments in public policy. The establishment of a “Health Policy Watch” in these pages is an invitation for research and reflection on these issues.

The challenge of determining that therapeutic intervention is futile is a recurrent ethical theme in critical care medicine. The process by which that determination is reached often involves demanding collaborative and interdisciplinary conversation and deliberation within the context of hospital policy, including ethics committee guidelines. The subsequent decision as to what happens next depends on resources, such as palliative care services, hospice, other hospital protocols, and, of course, family support.

A common tale of moral cacophony and euphemism on the city streets:Each day, an owner of a small business decides, “once and for all,” how to respond to the “homeless person” panhandling for “spare change” as she makes her way to work in the morning. Today, she looks the other way and holds more tightly to her purse. Nearby, a building contractor waits impatiently for the traffic light to change as his van is approached by a small and shabby band (...) of “street people” demanding to clean his windshield. He turns his wipers on to signal them away. Sometimes this works. At the next light, a woman carrying an infant swaddled to her torso offers a tube of three roses for a dollar. The driver smiles pleasantly, but does not stop. The businesswoman, now close to work, buys two tubes of roses and does not wait for the change from the five-dollar bill she earnestly presses into the mother's hand. (shrink)

Ongoing legislative proposals to overhaul United States immigration policy look very much like a new wave of nativism is sweeping the Congress. The movement, mounted in early 1995, is in full swing to limit immigrant populations from arriving, settling, producing, and benefiting as our parents' generations have done. Legislators and the courts are now considering the most complete antiimmigration social legislation since the decades following the First World War.

The era of managed care has arrived with portents of a new calculus to integrate cost and quality in health services. These devises such as “report cards” and “outcome measures” place performance against expectations and thus are expected to gauge the value of specific elements of healthcare delivery. From such measures and comparisons, the public will be able to better judge the appropriate, effective, and attractive place to seek their medical services. What is now widely used by utilization review, guiding (...) reimbursement decisions and allowances for the length of hospital stays, will soon have a more prosperous future as general guidelines built into the very framework of managed care agreements. (shrink)

The ideal of universal human rights is arguably the most potent moral concept marking the modern world. Its accelerated fruition in the last half of the twentieth century has created a powerful political force, laying the groundwork for future generations to extend and apply. Whereas anything resembling international legal status for human rights had to wait for the post-Nazi era, the bold proclamations of the Universal Declaration of Human Rights (UDHR, 1948) loosened a revolutionary force with endless potential for application (...) to the full range of human endeavors. The roots of this movement can be traced to each and every era in which the vulnerable and powerless sought justification to oppose arbitrary domination. Its roots are, therefore, deep and wide. (shrink)

The classic formulation of situation ethics in the 1960s was the result of the contention that the deductive application of general rules and principles in ethics was inherently flawed by the uniqueness of every situation. Quite often, ethical problems are problems precisely because existing rules do not apply four square to the singular situation at hand. There is a need, the argument ran, to assert the primacy of the special situation and to formulate a resolution of the unsettling circumstances appropriately (...) attuned to it. Situation ethics is, in a sense, a moral theory equivalent to case law in a legal system devoid of rule by law. (shrink)

Was this just another incendiary sound bite, headline news banner attacking the airwaves? Getting it wrong? Overstating some small technicality for the sake of getting attention? No, to all of the above: the most incendiary aspect of the blurb was that it was accurate. And it did get attention.

Jonathan Mann was a pioneer in establishing communication between the world of public health and that of human rights activism. At the very start, he strongly believed that although each of these two fields was in the midst of separate paradigm shifts, these shifts are essential, perhaps causal, to the combined health and human rights movement.

A 68-year-old gentleman is brought into a New York City ER at 2:30 P.M. by the squad in response to a 911 call from his neighbor, who found him unconscious in his bed. The cause of his condition is not known, but the man is unresponsive and requires immediate life support, including intubation, IV fluids, and pressors. Within minutes, his son arrives and attempts to deny permission for the LSMTx, claiming that his father is in end-stage ALS and has an (...) advance directive stipulating that he should not be invaded with LSMTx at this last moment in his life. The copy of the directive he produces is nonspecific in this context, because it qualifies refusal of LSMTx for “ … irreversible conditions …” and no one is sure if this situation is reversible. The advance directive names a daughter as proxy, and she is on her way from Maine, a 10-hour drive. (shrink)

As the concept of universal access to healthcare comes to America, an ethical paradox emerges. “Access” is the code word for being assured that sick people without financial resources get appropriate medical care. There is an ethical imperative to provide care for the sick – whether paying or not – and this value ought to give direction to any reformed system.

In this case, the patient's mother repeatedly asked about the health of any prospective child and whether she would be assured some custodial role. She also questioned the role of the prospective recipient. The committee facilitated obtaining the necessary information, sharing this information with the surrogate, and assisted the surrogate and two of her daughters to share both their feelings and additional information they possessed.

The rock climber and the law share in a common etymological allusion when each reaches a steep, high, and hard place. The climber “appeals” to the mountain by inching down on a rope and the law's “rappel” is similarly a route to more comfortable footing. Each step in this common process is germane to the eventual resolution, for it is to be found in the rappel process itself and in the meaning of each appeal.

SummaryHempel's Deductive‐Nomological model of explanation is compared to Sellars' brand of essentialism. The source of their differences is shown to lie in their views on the explanatory role of inductively based generalizations. An adequate explanation requires a reasoned account of why an empirical generalization fails. On Sellars' view this entails concentrating on the nature of the things whose behavior is in question. We thereby remove ourselves from the misleading positivist methodology in which one counterinstance renders a generalization uninteresting. It is (...) suggested instead that “disconfirmed” generalizations are of crucial positive methodological importance for purposes of theory development.RésuméLe modèle déductif‐nomologique de Hempel est comparéà l'essentialisme dans la version qu'en propose Sellars. L'auteur montre que leurs différences proviennent de ce qu'ils jugent différemment le rôle explicatif des généralisations inductives et les raisons de l'échec d'une généralisation empirique. D'après Sellars, il faut par conséquent se concentrer sur la nature des choses dont on observe le comportement; on évite ainsi les problèmes méthodologiques soulevés par les théories positivistes standard de la confirmation. L'auteur conclut en montrant que des généralisations infirmées ont une importance positive capitale pour le développement des théories. (shrink)

This article recounts the development of the Professional/problem-based Ethics Program, the original physicians’ professional ethics remediation course. Since 1992, more than 1,200 healthcare professionals of many disciplines have been mandated to attend ProBE by licensing boards and other oversight entities. Using a small-group, interprofessional setting, the ProBE Program assists participants to discover and articulate ethical underpinnings violated by their misconduct; appreciate professional responsibilities that are societal, regulatory, and ethical; and recommit to professional ideals. The authors describe the rationale for developing (...) ProBE, its curriculum, participant demographics, and infractions and reconsider medical professionalism in light of two decades of ProBE. (shrink)

BackgroundAlthough the peer review process is believed to ensure scientific rigor, enhance research quality, and improve manuscript clarity, many investigators are concerned that the process is too slow, too expensive, too unreliable, and too static. In this feasibility study, we sought to survey corresponding authors of recently published clinical research studies on the speed and efficiency of the publication process.MethodsWeb-based survey of corresponding authors of a 20% random sample of clinical research studies in MEDLINE-indexed journals with Ovid MEDLINE entry dates (...) between December 1 and 15, 2016. Survey addressed perceived manuscript importance before first submission, approximate first submission and final acceptance dates, and total number of journal submissions, external peer reviews, external peer reviewers, and revisions requested, as well as whether authors would have considered publicly sharing their manuscript on an online platform instead of submitting to a peer-reviewed journal.ResultsOf 1780 surveys distributed, 27 corresponding authors opted out or requested that we stop emailing them and 149 emails failed (e.g., emails that bounced n = 64, returned with an away from office message n = 70, or were changed/incorrect n = 15), leaving 1604 respondents, of which 337 completed the survey (21.0%). Respondents and non-respondents were similar with respect to study type and publication journals’ impact factor, although non-respondent authors had more publications (p = 0.03). Among respondents, the median impact factor of the publications’ journal was 2.7 (interquartile range (IQR), 2.0–3.6) and corresponding authors’ median h-index and number of publications was 9 (IQR, 3–20) and 27 (IQR, 10–77), respectively. The median time from first submission to journal acceptance and publication was 5 months (IQR, 3–8) and 7 months (IQR, 5–12), respectively. Most respondents (62.0%, n = 209) rated the importance of their research as a 4 or 5 (5-point scale) prior to submission. Median number of journal submissions was 1 (IQR, 1–2), external peer reviews was 1 (IQR, 1–2), external peer reviewers was 3 (IQR, 2–4), and revisions requested was 1 (IQR, 1–1). Sharing manuscripts to a public online platform, instead of submitting to a peer-reviewed journal, would have been considered by 55.2% (n = 186) of respondents.ConclusionCorresponding authors have high perceptions of their research and reported requiring few manuscript submissions prior to journal acceptance, most commonly by lower impact factor journals. (shrink)

BackgroundThe Freedom of Information Act (FOIA) provides access to unreleased government records that can be used to enhance the transparency and integrity of biomedical research. We characterized FOIA requests to Department of Health and Human Services (HHS) agencies, including request outcomes, processing times, backlogs, and costs.MethodsUsing HHS FOIA annual reports, we extracted data on the number of FOIA requests received and processed by HHS agencies between 2008 and 2017, as well as request outcomes. Processing times were reported in three time (...) increments, < 1–20, 21–60, or 61+ days, and trends in backlog status were also described. Information about costs and fees collected were aggregated.ResultsBetween 2008 and 2017, 69.6% of 530,094 HHS FOIA requests were received by the Centers for Medicare and Medicaid Services (CMS), 18.9% by the Food and Drug Administration (FDA), and 11.6% by all other HHS agencies. During this period, CMS processed 374,728 requests, FDA 114,938, and other HHS agencies 61,890. CMS and FDA reduced backlogged requests by 9396 (89.7%) and 4289 (65.3%), respectively, leaving backlogs of 1081 and 2279 requests at the end of 2017. CMS fully or partially granted 60.3% of requests whereas FDA fully or partially granted 72.4%. Of all requests to CMS, 82.0% were considered simple and 18.0% complex; 82.2% of simple requests and 54.9% of complex requests were processed in 20 days, and 5.6% and 29.9% were processed in 61+ days. In contrast, 60.2% of requests to FDA were considered simple and 39.8% complex; 28.8% of simple requests and 9.0% of complex requests were processed in 20 days, and 58.3% and 81.5% were processed in 61+ days. The costs to HHS associated with FOIA requests totaled $446.4 million ($809 per processed request), increasing from $28.1 million ($423 per request) in 2008 to $53.3 million ($1544 per request) in 2017. In total, HHS collected $8.5 million in fees (1.9% of total costs).ConclusionsFOIA is frequently used to obtain information about HHS and its agencies. With growing costs, minimal fees collected, and lengthy processing times, HHS agencies’ FOIA programs might be made more efficient through greater proactive record disclosure. (shrink)

Integrating large language models (LLMs) like GPT-4 into medical ethics is a novel concept, and understanding the effectiveness of these models in aiding ethicists with decision-making can have significant implications for the healthcare sector. Thus, the objective of this study was to evaluate the performance of GPT-4 in responding to complex medical ethical vignettes and to gauge its utility and limitations for aiding medical ethicists. Using a mixed-methods, cross-sectional survey approach, a panel of six ethicists assessed LLM-generated responses to eight (...) ethical vignettes. The main outcomes measured were relevance, reasoning, depth, technical and non-technical clarity, as well as acceptability of GPT-4’s responses. The readability of the responses was also assessed. Of the six metrics evaluating the effectiveness of GPT-4’s responses, the overall mean score was 4.1/5. GPT-4 was rated highest in providing technical (4.7/5) and non-technical clarity (4.4/5), whereas the lowest rated metrics were depth (3.8/5) and acceptability (3.8/5). There was poor-to-moderate inter-rater reliability characterised by an intraclass coefficient of 0.54 (95% CI: 0.30 to 0.71). Based on panellist feedback, GPT-4 was able to identify and articulate key ethical issues but struggled to appreciate the nuanced aspects of ethical dilemmas and misapplied certain moral principles. This study reveals limitations in the ability of GPT-4 to appreciate the depth and nuanced acceptability of real-world ethical dilemmas, particularly those that require a thorough understanding of relational complexities and context-specific values. Ongoing evaluation of LLM capabilities within medical ethics remains paramount, and further refinement is needed before it can be used effectively in clinical settings. (shrink)

Coral bleaching has impacted reefs worldwide and the predictions of near‐annual bleaching from over two decades ago have now been realized. While technology currently provides the means to predict large‐scale bleaching, predicting reef‐scale and within‐reef patterns in real‐time for all reef users is limited. In 2020, heat stress across the Great Barrier Reef underpinned the region's third bleaching event in 5 years. Here we review the heterogeneous emergence of bleaching across Heron Island reef habitats and discuss the oceanographic drivers that (...) underpinned variable bleaching emergence. We do so as a case study to highlight how reef end‐user groups who engage with coral reefs in different ways require targeted guidance for how, and when, to alter their use of coral reefs in response to bleaching events. Our case study of coral bleaching emergence demonstrates how within‐reef scale nowcasting of coral bleaching could aid the development of accessible and equitable bleaching response strategies on coral reefs. Also see the video abstract here: https://youtu.be/N9Tgb8N-vN0. (shrink)

Pancreatitis is a complex, progressively destructive inflammatory disorder. Alcohol was long thought to be the primary causative agent, but genetic contributions have been of interest since the discovery that rare PRSS1, CFTR and SPINK1 variants were associated with pancreatitis risk. We now report two associations at genome-wide significance identified and replicated at PRSS1-PRSS2 and X-linked CLDN2 through a two-stage genome-wide study. The PRSS1 variant likely affects disease susceptibility by altering expression of the primary trypsinogen gene. The CLDN2 risk allele is (...) associated with atypical localization of claudin-2 in pancreatic acinar cells. The homozygous CLDN2 genotype confers the greatest risk, and its alleles interact with alcohol consumption to amplify risk. These results could partially explain the high frequency of alcohol-related pancreatitis in men. © 2012 Nature America, Inc. All rights reserved. (shrink)