Volume 25, Issue 2, February 2025, Page 61-64.

Researchers and practitioners are increasingly using machine‐generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is often understood (...) to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use. (shrink)

Researchers and practitioners are increasingly using machine-generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is often understood (...) to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use. (shrink)

In their recent article Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision? Chapman et al. (2025) thoughtfully explore aspec...

Informed consent is the gateway to research participation. We report on the results of the formative evaluation that follows the electronic informed consent process for the All of Us Research Program. Of the nearly 250,000 participants included in this analysis, more than 95% could correctly answer questions distinguishing the program from medical care, the voluntary nature of participation, and the right to withdraw; comparatively, participants were less sure of privacy risk of the program. We also report on a small (...) mixed-methods study of the experience of persons of very low health literacy with All of Us informed consent materials. Of note, many of the words commonly employed in the consent process were unfamiliar to or differently defined by informants. In combination, these analyses may inform participant-centered development and highlight areas for refinement of informed consent materials for the All of Us Research Program and similar studies. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:When Is Enough, Enough?Megan HomsyThis was a case that stuck with many members of our transplant team for a long time. The patient was a 44-year-old Caucasian male evaluated for a liver transplant with a diagnosis of hepatitis C virus (HCV), originally diagnosed 11 years before the transplant evaluation. The patient met the criteria for the following substance use diagnoses: alcohol use disorder moderate in sustained remission, in (...) a controlled environment, opioid use disorder, severe, in sustained remission, on maintenance therapy, in a controlled environment, stimulant use disorder, amphetamine-type, severe, in early remission, in a controlled environment and stimulant use disorder, cocaine-type, severe in early remission, in a controlled environment.The patient had been living in a sober living housing program for approximately ten months prior to his transplant evaluation with me, his social worker. He had also been diagnosed with depression and bipolar disorder. He had been intermittently linked with mental health services and had participated in numerous detox and substance abuse programs over the last ten years, with varying degrees of success. He was in dual diagnosis treatment (i.e., treatment for co-occurring substance use and mental health disorders) through his Suboxone clinic and was completing toxicology screenings on a biweekly basis.After concluding the minimum three months of drug and alcohol treatment set forth by the state's Organ Transplantation Consortium, the patient graduated from his sober living program, moved in with his sister, and was listed for a liver transplant.The patient was transplanted five months after his clinic evaluation. At the time of the surgery, the patient's Suboxone was abruptly discontinued and replaced with IV Dilaudid. Within days of his transplant, the patient frequently expressed concerns about his pain. Several medical services attempted to manage the pain medications, resulting in his pain management plan being changed repeatedly and much confusion over his current medication regimen. During his liver transplant hospitalization, the RN found the patient with a needle in his arm, and after a search of the patient's hospital room, the hospital police found drug paraphernalia and illicit substances. The patient was eventually discharged to an inpatient substance abuse program, which he left before completing the program and against medical advice.During his first year post-transplant, I attempted to arrange other various treatment programs for him (most of which he did not follow through with) and to find housing for him (as he had been forced to leave his sister's home after his relapse). Eventually, the patient was incarcerated on drug-related charges. Numerous times, the patient missed completing his labs and his post-transplant appointments. He did not refill his immunosuppressant medications, and for lengthy periods of time, he was unreachable by the transplant care team, which resulted in my team members and I calling the patient's family, other providers, and the police for safety checks.In the aftermath of these issues, my colleagues and I had to reckon with the realization that we had failed the patient. As a team, our transplant center created a task force to review this case and what to do in the future to prevent such breakdowns in patient care. We created protocols for managing patients who, at the time of their transplant, are on Medication Assisted Treatment (MAT) such as Suboxone and methadone. Staff across the multidisciplinary team attended trainings regarding addiction, pain management, and best practices for MAT services. Additionally, our transplant center collaborated with our hospital's addiction treatment program for a streamlined referral process for transplant patients to addiction services.This patient's case and its sensational nature resulted in many conversations, both professional and unprofessional. Members of the social worker department became aware that personnel within transplant, though not involved in patient care, were inappropriately discussing this patient's case and engaging in unprofessional behavior. Said actions led to the termination of a member of the transplant team. I was placed in the unenviable [End Page E3] position of having to report this behavior to hospital management and legal teams to protect a vulnerable patient.The ethical challenge behind this case really stems from the transplant team attempting to balance two... (shrink)

Moral distress names a widely discussed and concerning clinician experience. Yet the precise nature of the distress and the appropriate practical response to it remain unclear. Clinicians speak of their moral distress in terms of guilt, regret, anger, or other distressing emotions, and they often invoke them interchangeably. But these emotions are distinct, and they are not all equally fitting in the same circumstances. This indicates a problematic ambiguity in the moral distress concept that obscures its distinctiveness, its relevant circumstances, (...) and how individual clinicians and the medical community should practically respond to it. We argue that, in a range of situations that are said to be morally distressing, the characteristic emotion can be well‐understood in terms of what Bernard Williams calls “agent‐regret.” We show what can thereby be gained in terms of a less ambiguous concept and a more adequate ethical response to this distinctive and complex clinician experience. (shrink)

A key feature of unregulated mHealth research is the diversity of participants in this space. Applying an approach drawn from user experience design, we describe a set of archetypal unregulated mHealth researcher “personas,” which range from individuals who seek empowerment or have philanthropic objectives to those who are primarily motivated by financial gain or have misanthropic objectives. These descriptions are useful for evaluating policies applicable to mHealth to understand how they will impact various stakeholders.

Ancient Jewish law took a strict approach to medical relationships between Jews and non-Jews. Sages forbade Jews to provide non-Jews with medical services: to treat them, circumcise them, or deliver their babies, in order to refrain from helping pagan-idolatrous society. Such law created particularly severe social conflicts in cases of mixed societies based on joint systems. The current paper focuses on the attitude of Moses ben Maimon, a medieval Sephardic Jewish Rabbi towards providing medical service to gentiles. (...) Following the classical rabbis R. Moshe ben Maimon in his halakhic tome Mishne Torah, objected to treating non-Jews. His rigid attitude found expression in several aspects of helping and giving medical treatment to non-Jews. Despite the classical rabbinical restrictions on medical relationships between Jews and non-Jews, and his own rigid halakhic verdicts, Maimonides treated gentiles. According to one understanding, Maimonides cured Muslims for a wage, which is permitted. However, it seems that the main factor that may have facilitated Maimonides halakhic position is the identification of Islam as a non-idolatrous faith. Interestingly not only on medical issues did the Maimonides act differently than his halakhic rulings in Mishne Torah, rather in other areas as well. (shrink)

Bioethics education in residency helps trainees achieve many of the Accreditation Council for Graduate Medical Education milestones and gives them resources to respond to bioethical dilemmas. For this purpose, The Providence Center for Health Care Ethics has offered a robust clinical ethics rotation since 2000. The importance of bioethics for residents was highlighted as the COVID-19 pandemic raised significant bioethical concerns and moral distress for residents. This, combined with significant COVID-19-related practical stressors on residents led us to develop (...) a virtual ethics rotation. A virtual rotation allowed residents flexibility as they were called to help respond to the unprecedented demands of a pandemic without compromising high quality education. This virtual rotation prioritized flexibility to support resident wellbeing and ethical analysis of resident experiences. This article describes how this rotation was able to serve residents without overstraining limited bandwidth, and address the loci of resident pandemic distress. As pandemic pressures lessened, The Providence Center for Health Care Ethics transitioned to a hybrid rotation which continues to prioritize resident wellbeing and analysis of ongoing stressors while incorporating in-person elements where they can improve learning. This article provides a description of the rotation in its final form and resident feedback on its effectiveness. (shrink)

La traduction latine du livre de Maïmonide Moreh Nevukhim | Guide des égarés, a été l'ouvrage juif le plus influent des derniers millénaires (Di Segni, 2019 ; Rubio, 2006 ; Wohlman, 1988, 1995 ; Kohler, 2017). Elle marqua le début de la scolastique, fille du judaïsme élevée par des penseurs juifs, selon l'historien Heinrich Graetz (Geschichte der Juden, L. 6, Leipzig 1861, p. xii). Imprimée par la première presse mécanique de Gutenberg, son influence en Occident s'étendit jusqu'au Vème concile du (...) Latran (1512-1517) « où les savants furent encouragés à lever les difficultés qui semblaient diviser l'ensemble de la théologie et de la philosophie — (Leibniz, Théodicée, 11 ) ». Pendant des siècles, le Guide a révolutionné le programme d'instruction scolaire en réintégrant dans le domaine de la foi les lois de la pensée (dont la quatrième est devenue le principe de la raison suffisante de Leibniz). Cette collection complète de notes qui expose les idées du Guide fournit tous les passages sélectionnés et réécrits par Leibniz. Cette première traduction complète bilingue annotée des manuscrits originaux en latin sert de porte d'entrée à la foi conforme à la Raison. -/- « L'excellent livre du Rabbin Moïse Maïmonide, le Guide des égarés, est plus philosophique que je ne l'avais imaginé et mérite une lecture attentive. L'auteur, distingué par son intelligence en philosophie, était versé dans les mathématiques, l'art médical, et aussi dans la connaissance de Saintes Écritures. » — G. W. LEIBNIZ, 1685, Anthologie de Leibniz du Guide de Maïmonide, Chapitre III. (shrink)

Maimonides, one of the most celebrated rabbis in the history of Judaism, was a prolific author of influential Arabic philosophical and medical treatises and two of the most important works on Jewish law. Medical Aphorisms is the best known and most comprehensive of his works, and Gerrit Bos offers here a masterful English translation with detailed annotations. Medical Aphorisms consists of approximately 1500 maxims compiled by Maimonides from the treatises of Galen, the renowned ancient Greek (...) physician. Maimonides arranges the aphorisms into twenty-five treatises, organizing them by traditional medieval subspecialties such as gynecology, hygiene, and diet. He also includes a section examining unusual cases from Galen and offers a critical analysis of Galen’s theories. The first of six volumes, Medical Aphorisms provides tantalizing insights into the work of Galen, as it draws on treatises of Galen that no longer exist and shines a light into the world of medieval and ancient medicine. It will be a rich and valuable resource for students and scholars working in the history of medicine, Jewish studies, and medieval Arabic culture. (shrink)

La relación entre lenguaje y creación no se reduce para San Agustín en los recursos que presenta un término de la analogía para ilustrar al otro, sino que el lenguaje tiene un poder de agenciamiento en la realidad cuya eficacia está en su capacidad de determinar, contaminar, purificar o enredar las relaciones del ordo amoris. A lo largo de La Ciudad de Dios puede verse como la palabra performa, su potencia es una promesa en sí misma, su posibilidad o imposibilidad (...) comunicativa son asuntos que devienen, para el de Hipona, de la palabra en relación, del cuerpo de una palabra inserta y encarnada en una trama de vínculos visibles e invisibles que se ordenan o no, según su condición, a lo divino. (shrink)

The Routledge Handbook of Indian Buddhist Philosophy is an outstanding reference source to the principal philosophers in the diverse Buddhist traditions of India, from the early Pāli writings to the twentieth century. The Handbook provides thorough coverage of the most significant figures, texts and debates that animate Buddhist philosophy. A key feature is the attention given to the ideas and works of particular Buddhist thinkers, placing the author at the centre of inquiry. Forty chapters by an international team of contributors (...) are divided into eight clear sections, each of which includes an introduction by the editors: Buddhas as Philosophers Poet Philosophers Abhidharma Philosophers Philosophical Founders Early Period Philosophical Commentators (fifth - eighth century) Middle Period Philosophical Commentators (eighth - ninth century) Late Period Philosophical Commentators (tenth - twelfth century) Modern Philosophers. Essential reading for students and researchers in Eastern and comparative philosophy and especially Buddhist philosophy, The Routledge Handbook of Indian Buddhist Philosophy will also be of interest to those studying Buddhism in religious studies and related subjects. (shrink)

BackgroundMulti-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals.MethodsWe collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget.ResultsThe total costs of gaining approval were 38 % of the budget for (...) a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety.ConclusionsImprovements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. (shrink)

Revered as the ‘Queen of Qawwali’ and ‘Queen of Sufi music’, sixty-seven-year-old Abida Parveen is a spiritual phenomenon who transcends gender while performing. She is known for her signature fashion style of buttoned-up masculine-cut kurta with matching shalwar and an ajrak shawl. Her aesthetic circulates within transnational and national fashion media and popular cultural spaces through descriptors such as androgynous, masculine, modest, indigenous and sacred. As a highly respected figure with widely circulating performances on both the national and international stages, (...) as well through multiple media circuits, including television, social/digital media and broadcast concerts, Parveen's undeniable fame and her transgressive entry into an otherwise male-dominated music genre raises important questions about gender, embodiment, spirituality and the sacred. In analysing Parveen's body and dress in performance, I centre her sartorial style as sites of spirituality and affect to ask: what does it mean for Parveen to transcend gender through a performance of androgynous Sufism and mobilise it as an entry way into spiritual iconism? What imaginations around spirituality and the sacred become available through Parveen's sartorial practices? How does Parveen's style offer an alternative route to Muslim spirituality? Taking up Parveen's embodied coagulation between fashion and the sacred reveals an absence in feminist fashion studies on which subjects and styles are viewed as important, relevant, resistant or transgressive and thus worthy of theorisation. As a feminist scholar interested in the relationship between gender, power and self/representation, I see Parveen as a key global cultural and spiritual figure who necessitates transnational feminist analysis. This article is situated at the intersections of fashion and cultural studies, feminist, queer and trans spiritualities and South Asia studies. (shrink)

In June 2016, Qandeel Baloch, a 26-year-old Pakistani social media star, was murdered. Her death sparked both public outrage and a policy debate around ‘honour killing’, digital rights and sex-positive sexuality across Pakistan and its diasporas. Qandeel challenged what constitutes a proper Pakistani woman, an authentic Baloch and a respectable digital citizen. As a national sex symbol, she failed at the gendered workings of respectable heterosexuality, and during her short lifetime she optimised this failure and public fetish as a technologically (...) mediated social currency (clicks, hashtags, comments, likes, reposts) to build a transnational celebrity brand. I centre Qandeel Baloch’s life and afterlives to think through the economic entanglements of honour, racialised ethnicity, coloniality, sexual violence and social media at the intersections of globalised anti-Blackness and honourable brownness as a matter of global capital. Within these complex registers of coloniality, Qandeel’s life and brutal murder necessitate a rethinking of categories of racialised ethnicity (Baloch), sexual labour (racial capital) and social media (digitality) as vectors of value for capitalism and nationalism. By centring Qandeel, I define honour as a form of racialised property relations. This rereading of honour, as an economic metric of heteropatriarchy, shifts my lens of honour killing from a crime of culture to a crime of property. Women’s honour functions as a necrocapitalist technology that constructs female and feminine bodies as the debris of heterosexual empire through racialised, gendered and sexualised property relations. These relations and registers of honour get further complicated by social media currency and discussions around digital rights, privacy and freedom of expression. Honour is, therefore, the economic management of sexual morality produced through race, religion and imperialism. (shrink)

Abstract:Since Homeric times, psychotherapy has been an essential part of the medical act. Initially, the word of physicians had a magical character. Plato rationalizes this in many of his dialogues. In "Charmides," he dives deeper into this matter and proposes to apply it to every disease. Analysing this dialogue has fundamental consequences for psychotherapy: 1) Remedy and epodé (charm) must be applied in every doctor–patient relationship. 2) The body can only be healed if the soul is cured first by (...) a charm. Patients must "offer" their souls to the physician, which implies the need for confidence and the unavoidable asymmetry which characterize doctor–patient relationships. 3) The openness of the patient's soul to the physician and the physician's "beautiful speech" to the patient will enable the latter to reach the state of sophrosyne (temperance), the condition of the possibility of true health. In the discussion of the meaning of sophrosyne, Socrates questions every one of the disciples' propositions and concludes that the only thing one can be sure of is that sophrosyne is a way of searching for virtue (areté). Later, in Theaetetus, Plato adds another element: temperance is a homoiosis theó, that is, the assimilation of patient with God. With this, Plato seals the ethical character of psychotherapy forever. (shrink)

First, I would like to thank Dr. Phillips for his generous words about the potential interest of my work. He speaks about the fact that it is "insightful" and thought-provoking ("it offers us much to think about"). In his comment Dr. Phillips reviews the main moments of the evolution of treatment by words in the Greek world and he focuses on Plato's Dialogue Charmides, whose analysis is the center of my article. He even quotes some parts of the dialogue, (...) which I mention too, although in a different translation. He rightfully underlines the moment in which Socrates tells Charmides: "And the soul... my dear friend, is cured by means of certain charms, and these charms consist of beautiful words. It is a result of... Read More. (shrink)

This paper examines interpersonally sensitive exchanges in two calls for information to the call centre of a public transport company. In order to provide relevant information and facilitate sequence progressivity, the agents need to go through specific steps. Although this is typical of institutional settings, customers may not necessarily be aware of them. The excerpts examined in this paper show how the customers’ lack of knowledge of the institutional steps the agents have to go through to attend to their requests (...) and customers’ claims to product knowledge, coupled with the agents’ labour intensive work at the call centre, provide fertile ground for the agents’ verbal outbursts which are oriented to as interpersonally sensitive by the customers in so far as they are interpreted as inappropriate and potentially impolite. The analysis draws on the notion of face and incorporates a variety of concepts from pragmatics and Conversation Analysis. (shrink)

These three reflections look at the theological and ethical implications of sexual violence in light of the attention brought by #MeToo. The first explores ethnographic interviews which indicate that Church leaders, teachers, and parents contribute to rape culture by leaving sexual violence unaddressed in Christian sexual education, arguing that it must be reconstructed to eliminate the Church’s participation in a culture that promotes gender-based violence. The second notes that feminist scholarship has made the case that rape and “unjust sex” are (...) associated with what is considered acceptable heterosexuality, require the category of “cultural sin” to account for the social responsibility of persons. Finally, the third explores how a feminist political theological ethics of “dangerous memory” is required to critique of the structures and systems that violate women’s selves and bodies. (shrink)

Entre los múltiples legados de la filosofía de Agustín de Hipona se detecta un reconocimiento muy atento al lenguaje. Su aproximación trata de una variedad de encuadres que exhiben que la lengua debe entenderse en relación a una cierta noción de praxis. No solo porque sus escritos sintetizan un rico recorrido propio de exploraciones lingüísticas teóricas y empíricas. Sino también porque es a través de una efervescente implicación en el discurso en donde Agustín construye su posición gestualmente. Lo hace escribiendo, (...) predicando, corrigiendo, contestando, discutiendo, enseñando. Incesantemente sumergido en algún acto verbal que incita a que en su obra se pueda respirar una original simbiosis entre lenguaje y acción. Sus advertencias sobre la blasfemia y de la maledicencia resultan fundamentales para comprender la postura lingüística sobre el lenguaje de reniego de toda una tradición posterior. (shrink)

What do the terms sex and gender identity, or gender history, mean in a medical context? When does it matter to a healthcare professional whether a patient has male or female reproductive biology?...

Daryl Pullman provides a valuable comparison between the Medical Assistance in Dying (MAiD) rates in Canada and California, illuminating the factors that appear to be pushing Canada down a slippery...

Institutional guidelines for transgender children and adolescent minors fail to adequately address a critical juncture of care of this population: how to proceed if a minor and their parents have disagreements concerning their gender-affirming medical care. Through arguments based on ethical, paediatric, adolescent and transgender health research, we illustrate ethical dilemmas that may arise in treating transgender and gender diverse youth. We discuss three potential avenues for providing gender-affirming care over parental disagreement: legal carve-outs to parental consent, the mature (...) minor doctrine and state intervention for neglect. Our discussion approaches this parent–child disagreement in a manner that prioritises the developing autonomy of transgender youth in the decision-making process surrounding medically assisted gender affirmation. We base our arguments in the literature surrounding the risks and benefits of gender-affirming therapy in transgender children and the existing legal basis for recognising minors’ decision-making authority in certain medical situations. (shrink)

Background Informed consent is a process in which a healthcare provider obtains permission from an individual prior to surgery. Patient satisfaction with the informed consent process is one of the main indicators of healthcare service quality. This study aimed to assess patient satisfaction with surgical informed consent at Jimma Medical Center, Ethiopia, in 2020. Methods A facility-based cross-sectional study was conducted from April 1 to June 30, 2020, at Jimma Medical Center. Face-to-face interviews were conducted using (...) structured questionnaires. A systematic sampling technique was used to select the study participants. The collected data were coded, entered into Epi data version 3.1, and analyzed using SPSS version 25. Bivariate and multivariate regression analyses were performed to determine the association between patient satisfaction and socio-demographic and facility-related factors. In multivariate regression, predictors with a P-value of < 0.05 were considered statistically significant. Results Totally 372 study participants were interviewed with a response rate of 97.8%. Nearly two-fifths (43%) of patients were satisfied with surgical informed consent. Living in an urban area (AOR: 2.279, 95% CI 1.257–4.131), having current referred history (AOR: 1.856, 95% CI 1.033–3.337), consent form version (AOR: 2.076, 95% CI 1.143–3.773), time spent on the provision of informed consent (AOR: 5.227, 95% CI 2.499–10.936) and having better patient-health providers relationship (AOR: 5.419, 95% CI 3.103–9.464) predictors were positively associated with patient satisfaction. Conclusion Patient satisfaction with the surgical informed consent process was relatively low. Therefore, Health care professionals need to emphasize a way of delivering informed consent, patients' needs and obey a standard informed consent to improve patient satisfaction. (shrink)

American society tends to medicalize or criminalize social problems. Criminal justice reformers have made arguments for a positive role in the relief of poverty that are similar to those aired in healthcare today. The consequences of criminalizing poverty caution against its continued medicalization.

Whenever the legitimacy of a new or ethically contentious medical intervention is considered, a range of influences will determine whether the treatment becomes accepted as lawful medical treatment. The development and introduction of abortion, organ donation, gender reassignment, and non-therapeutic cosmetic surgery have, for example, all raised ethical, legal, and clinical issues. This book examines the various factors that legitimatise a medical procedure. Bringing together a range of internationally and nationally recognised academics from law, philosophy, medicine, health, (...) economics, and sociology, the book explores the notion of a treatment, practice, or procedure being proper medical treatment, and considers the range of diverse factors which might influence the acceptance of a particular procedure as appropriate in the medical context. Contributors address such issues as clinical judgement and professional autonomy, the role of public interest, and the influence of resource allocation in decision-making. In doing so, the book explores how the law, the medical profession, and the public interact in determining whether a new or ethically contentious procedure should be regarded as legitimate. This book will be of interest and use to researchers and students of bioethics, medical law, criminal law, and the sociology of medicine. (shrink)

We present the perspective of a Bioethics Consultation Service operating in an urban hospital in Dayton, Ohio, USA, as it adapted to treating Sars-CoV-2 patients throughout 2020. Since the first case of COVID-19 was reported in Ohio on 9 March 2020, until 1 January 2021, the Bioethics Consultation Service was consulted 60 times, a 22.5% increase from the same period of 2019. The most common diagnoses requiring consultation included end-stage renal disease requiring dialysis, out-of-hospital cardiac arrest, and sepsis. Only 10% (...) of consultations were for patients hospitalized with COVID-19. This is a qualitative analysis of the cases we saw and a discussion of factors that affected our service while adapting to COVID-19 standards of care. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 10.2 (2000) 175-188 [Access article in PDF] Scope Note 38 Bioethics Resources on the Web * Once described as an "enormous used book store with volumes stacked on shelves and tables and overflowing onto the floor" (Pool, Robert. 1994. Turning an Info-Glut into a Library. Science 266 (7 October): 20-22, p. 20), Internet resources now receive numerous levels of organization, from basic directory listings (...) to elaborate "links" (cross-references to other Internet documents) that flash and glow in the dark. In many ways, the Internet functions as a direct extension of the traditional library. Following linked references across various sites is an electronic version of browsing library stacks, and the serendipitous discoveries made while "surfing the Net" recall the wonders of physically going "book-to-book." Although many of the Internet's best aspects augment library strengths by eliminating physical distance from sources, Net resources pose unique problems for researchers. It is not always clear who is responsible for the content of Web documents, when the document was produced, or how often (if ever) it is updated. Internet resource tools, then, must enable researchers to identify appropriate resources and to evaluate what they find when they get there. Web Research as Taking "Snapshots" Given the Internet's visual nature and fluid content, the process of conducting research on the Web has been likened to taking an informal picture of information on a specific date at a particular time. This metaphor also conveys the "zoom-in" aspect of searching through Web pages by going from general to specific categories. In the first section of this Scope Note, National Reference Center for Bioethics Literature (NRCBL) staff present a snapshot of bioethics resources taken during the spring months of 2000. Entries are divided into the categories of directories, electronic journals, full-text documents, news/current awareness, and teaching resources. In the two subsequent sections, this series of categories is repeated for entries on a specific topic within bioethics-genetics-and again for general search and evaluation tools. Where a Web site may contain pages applicable [End Page 175] to more than one category, multiple entries are made for that site with appropriate information for each category.Much as telecommunication advances have strengthened the relationship of patients and providers as partners, the dynamic nature of the Internet acknowledges that the researcher functions as a librarian whenever accessing the Web. It is our hope that BIOETHICSLINE and the other NRCBL databases not only will enable researchers to search the Web more efficiently, but also will help them to evaluate what they find when they get there. Bioethicsline on the Web: An International Plan in Progress Once only available through libraries, the U.S. National Library of Medicine (NLM), the funding agency for the ongoing development of the BIOETHICS LINE® database from the Kennedy Institute, has provided free Web access to that database of 63,000 citations since September 1998 through Internet Grateful Med. Plans are now underway to eliminate such specialty databases and incorporate all citations into PubMed (for journal articles) or LOCATORplus (for book-like materials and chapters in books). Both of these databases are likewise available at no cost on the Web. In the transition to PubMed and LOCATORplus some features of BIOETHICSLINE that presently are available may be lost. Researchers are encouraged to contact the National Reference Center for Bioethics Literature with search requests or for search strategy assistance with either the current or the future system ([email protected]).The inclusion of bioethics citations in PubMed and LOCATORplus will have several advantages. First, unique keywords from the Bioethics Thesaurus will be considered for inclusion in Medical Subject Headings (MeSH), the indexing vocabulary for PubMed and LOCATORplus, thereby enhancing retrieval of relevant clinical literature by offering more precise terminology covering ethical issues. Second, it will be easier to identify foreign-language materials, which are not currently included in the scope of BIOETHICSLINE. Third, the updating schedule will become more frequent. On the other hand, there may be some loss of searching precision because certain specialized features... (shrink)

The Medical School for International Health was created in 1996 by the Faculty of Health Sciences at Ben-Gurion University of the Negev in affiliation with Columbia University’s Health Sciences division. It is accredited by the New York State Board of Education. Students complete the first three years of the program on the Ben-Gurion University campus in Be’er-Sheva, Israel, while fourth-year electives are completed mainly in the United States along with a two-month global health elective at one of numerous sites (...) located around the world . The unique four-year, American-style curriculum is designed not only to prepare physicians who will be able to work at both an individual and community level but also at both of these levels anywhere in the world. In this way, it combines elements of medical and public health curricula not limited to an American perspective. (shrink)

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is “incompatible with life” even though some children with the condition live for several years. This paper considers parents’ response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading (...) and foregrounding Cathryn Molloy’s recuperative ethos theory, we find that parents demonstrate recuperative ethos in response to physicians’ descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric. We argue that, by using language such as “incompatible with life,” physicians distance themselves from families, creating not care, but the very gulf that requires recuperation. We conclude that medical professionals would do well to engage with the trisomy 18 community—including learning from blogs and online forums— employ palliative care practices, and seek more accurate, descriptive language that is compatible with care. (shrink)

Inclusion of children in medical decision making, to the extent of their ability and interest in doing so, should be the default position, ensuring that children are routinely given a voice. However, optimizing the involvement of children in their health care decisions remains challenging for clinicians. Missing from the literature is a stepwise approach to assessing when and how a child should be included in medical decision making. We propose a systematic approach for doing so, and we apply (...) this approach in a discussion of two challenging clinical cases. The approach is informed by a literature review, and is anchored by case studies of teenagers' refusal of clinical care, regulatory requirements for research assent, and the accepted approach to involving cognitively impaired adults in medical decisions. (shrink)

Limited data exist in the specific content of pediatric outpatient ethics consults as compared to inpatient ethics consults. Given the fundamental differences in outpatient and inpatient clinical care, we aimed to describe the distinctive nature of ethics consultation in the ambulatory setting. This is a retrospective review at a large, quaternary academic center of all outpatient ethics consults in a 6-year period. Encounter-level demographic data was recorded, and primary ethical issue and contextual features were identified using qualitative conceptual content (...) analysis. A total of 48 consults were identified representing 44 unique patients. The most common primary ethical issue was beneficence and best interest concern comprising 20 (42%) consults, followed by refusal of recommended treatment comprising 11 (23%) consults and patient preference/assent comprising 5 (10%) consults. The most common contextual features were staff-family communication dispute/conflict comprising 28 (58%) consults, followed by legal involvement comprising 25 (52%) consults and quality of life comprising 19 (40%) consults. The most common consulting specialty was hematology/oncology. Ethical issues encountered in the provision of outpatient pediatric care are distinct and differ from those in inpatient consults. Further research is necessary to identify strategies and educational gaps in outpatient ethics consultation to increase its effectiveness and utilization. (shrink)

Rambam Medical Center, the only tertiary care center and largest hospital in northern Israel, was subjected to continuous rocket attacks in 2006. This extreme situation posed serious and unprecedented ethical dilemmas to the hospital management. An ambiguous situation arose that required routine patient care in a tertiary modern hospital together with implementation of emergency measures while under direct fire. The physicians responsible for hospital management at that time share some of the moral dilemmas faced, the policy they (...) chose to follow, and offer a retrospective critical reflection in this paper. The hospital’s first priority was defined as delivery of emergency surgical and medical services to the wounded from the battlefields and home front, while concomitantly providing the civilian population with all elective medical and surgical services. The need for acute medical service was even more apparent as the situation of conflict led to closure of many ambulatory clinics, while urgent or planned medical care such as open heart surgery and chemotherapy continued. The hospital management took actions to minimize risks to patients, staff, and visitors during the ongoing attacks. Wards were relocated to unused underground spaces and corridors. However due to the shortage of shielded spaces, not all wards and patients could be relocated to safer areas. Modern warfare will most likely continue to involve civilian populations and institutes, blurring the division between peaceful high-tech medicine and the rough battlefront. Hospitals in high war-risk areas must be prepared to function and deliver treatment while under fire or facing similar threats. (shrink)

Medicine and health are surprisingly separate. In the introduction to his 1963 master work on medical economics, Kenneth Arrow acknowledged that “the subject is the medical-care industry, not health.” In the 50 years that followed, researchers, policymakers, and public health professionals generated valuable and varied insights into health, impacting both behaviors and environments while addressing social determinants and demographic trends. Yet medical care has followed an even steeper upward trajectory, growing rapidly in scientific precision, public esteem, and (...) technical sophistication.As a result, the economic gap between the two domains has widened. The U.S. health care system spends almost $3 trillion annually. Preventive screening and early intervention bridge medical care and health, as do nutrition, behavioral health, aging, and a few other fields. But the money is overwhelmingly in medical care, particularly rescue care for those with acute illnesses or serious complications of chronic disease. (shrink)

The Truth and Reconciliation Commission of Canada made it clear that understanding the historical, social, cultural, and political landscape that shapes the relationships between Indigenous peoples and social institutions, including the health care system, is crucial to achieving social justice. How to translate this recognition into more equitable health policy and practice remains a challenge. In particular, there is limited understanding of ways to respond to situations in which conventional practices mandated by the state and regulated by its legal apparatus (...) come into direct conflict with the values and autonomy of Indigenous individuals, communities, and nations. In this paper, we consider two cases of conflict between Indigenous and biomedical perspectives to clarify some of the competing values. We argue for the importance of person‐ and people‐centered approaches to health care. These value conflicts must be understood at multiple levels to clarify their personal, social, cultural, and political dimensions. Taking into account the divergence between epistemic cultures and communities allows us to understand the multiple narratives deployed in decision‐making processes in clinical, community, and juridical contexts. Recognizing the knowledge claims of Indigenous peoples in health care can help clinicians avoid reinforcing the divides created by the structural and institutional legacy of colonialism. This analysis also provides ways to adjudicate conflicts in health care decision‐making by disentangling cultural, political, medical, and pragmatic issues to allow for respectful dialogue. Insofar as the engagement with cultural pluralism in health care rights is conducted with reciprocal recognition, the medical community and Indigenous peoples can address together the difficult question of how to integrate different epistemic cultures in the health care system. (shrink)

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and (...) ability to interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or... (shrink)

Medicine is no stranger to patience. In fact, the word ‘patient’ has an etymology stemming from the Latin word ‘patiens’, describing the one who tolerates suffering.1 In this sense, the cornerstone of medicine, the patient–physician relationship, reflects passive language, ‘to suffer’. This suffering must be understood, and should be most intimately understood by those who provide care that is beyond a patient’s reach. The case of patients and their loved ones requesting medically futile care at the end of life is (...) one where further treatment is replaced by patience and, more rarely, the patience of medical teams is replaced by futile treatment. At the heart of this debate is not only the denial of futile care but also the need for understanding the extent of patience that must be endured as a result of it. Burns and Truog2 remark on this ethical dilemma: > The best solution – although perhaps also the most difficult – is…tolerating the demands for care that we believe to be futile, and finding ways to better support the emotional needs of each other in those rare cases where we are called on to provide this care. The concept of futility in care represents medical intervention with limited, or no, chance of resulting in what is regarded as a clinically successful outcome. Since the American Medical Association’s endorsement of the lack of consensus on futile care in 1999, this integral conflict remains.3 This is a conflict of understanding. I believe this understanding can be strengthened by acknowledging the Arabic word for patience, ‘ sabr ’, along …. (shrink)

Medical-legal partnership (MLP) embeds attorneys and paralegals into care delivery to help clinicians address root causes of health inequities. Notwithstanding decades of favorable outcomes, MLP is not as well-known as might be expected. In this essay, the authors explore ways in which strategic alignment of legal services with healthcare services in terms of professionalism, information collection and sharing, and financing might help the MLP movement become a more widespread, sustainable model for holistic care delivery.

Pullman (2023) compares medically-assisted dying (MAiD) laws and rates of medically-assisted deaths in Canada and California, noting some differences in the legal regime and a higher rate of MAiD i...

The formal justice model proposed by Anita Silvers in Disability, Discrimination, and Difference emphasizes the social model of disability and the need for full equality of opportunity, and it suggests that a distributive model of justice that gives special benefits to individuals with disabilities is self-defeating. Yet in that work, Silvers allows an exception for the "profoundly impaired." In this paper, I show how the formal justice theory falls short when it comes to defining and dealing with "profoundly impaired" individuals (...) and explore the ways in which making the exception raises serious theoretical concerns for the grounding of the formal justice model. (shrink)

Medical students’ concerns during clinical clerkships may not always be addressed with mentors who work under significant time constraints. This study examined 3rd year students’ survey responses regarding patient encounters to elucidate what may be hidden aspects of their learning environment. We analyzed results to an 18-item survey completed during a required ethics and professionalism course in third-year medicine clerkships over a period of 18 months. The survey covered types of concerns elicited by patient encounters, interactions with mentors about (...) concerns, perceptions of mentors, and level of moral distress. We also examined results of a 7-item evaluation of small group discussions during the study period. 1210 surveys and 195 evaluations constituted the study samples. Students’ concerns related primarily to ethics (36.4%, n = 441) and quality of care (34.5%, n = 418). Concerns had not been raised with a mentor in 535 (44.2%) instances. Students experienced moral distress in connection with 35.4% (n = 324) of cases; this was particularly common when a concern applied to a mentor. Higher levels of moral distress were associated with a lower likelihood of wishing to emulate the mentor (r = -0.27, p <.001). Two thirds of students, 66.9% (n = 107), stated that small group discussions where concerns were discussed lowered their stress levels. We suggest that clinical mentors be made aware of students’ learning needs and that structured discussions be available for students to articulate concerns with peers and facilitators in efforts to uncover elements of the hidden curriculum with the goal of optimizing students’ well-being, learning and professional development. (shrink)

Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care (...) and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research. (shrink)

In this article, we examine the emergence of a concept of medical feeding that emphasizes artificiality and medical technology. We discuss how this concept has been created in specific contrast to the daily provision of food and water; medical definitions retain clear disjunctures with cultural and religious beliefs surrounding food, gendered aspects of eating and feeding, and the everyday practices of social and family life in the United States. We begin with an examination of the historical processes (...) involved in creating artificial nutrition and hydration as a medical concept, including the evolution of terminology and practices in relation to technology advancement, legal cases, and public discourse. We.. (shrink)

To write about the disease of breast cancer from both scientific and spiritual perspectives is to reflect upon our genetic and spiritual ancestry. We examine the issues involved in breast cancer at the intersections of spirituality, technology, and science, using the fundamental thing we know about being human: our bodies. Our goal in this essay is to offer close readings of women's spiritual and bodily journeys through the disease of breast cancer. We have discovered that both illness and health come (...) within the stories of particular people and particular disciplines. And to learn more about breast cancer, both scientific and spiritual aspects, one must be attentive to such particularities. Medicine and religion are bodily experiences, and being a body-self is what it means to be human. (shrink)

Hospital ethics committees in The Netherlands have had the unique responsibility of developing euthanasia policies for their institutions. Although each policy necessarily reflects a particular facility, family resemblances necessarily remain. In the interest of ethics committees outside The Netherlands that may soon face the same challenge, two such policies are presented here accompanied by commentary high-lighting their similarities and differences.