In 2018-2019, at the Keck School of Medicine of the University of Southern California, we developed and piloted a narrative-based health systems science intervention for patients living with HIV and medical students in which medical students co-wrote patients’ life narratives for inclusion in the electronic health record. The pilot study aimed to assess the acceptability of the “life narrative protocol” from multiple stakeholder positions and characterize participants’ experiences of the clinical and pedagogical implications of the LNP. Students were recruited from (...) KSOM. Patients and staff were recruited from the Maternal, Child, and Adolescent/Adult Center for Infectious Disease and Virology at Los Angeles County+USC Medical Center. Ten patients, seventeen students, and ten MCA staff participated in the pilot study. Qualitative methods were used to gather data from students’, patients’, and staff’s perspectives. Three themes emerged from the thematic analysis: patients’ life narratives conveyed their unique life experiences and voices; the protocol could result in wide-ranging effects on HIV care; the LNP enabled students to contribute value to patients’ healthcare. Across groups, participants considered the LNP an acceptable intervention. The LNP, its limitations, and implications for HIV care, narrative medicine, and health information technology are presented. (shrink)

Before there was the digital divide there was the analog divide– and universal service was the attempt to close that analogdivide. Universal service is becoming ever more complex in terms ofregulatory design as it becomes the digital divide. In order to evaluatethe promise of the next generation Internet with respect to the digitaldivide this work looks backwards as well as forwards in time. Byevaluating why previous universal service mechanisms failed andsucceeded this work identifies specific characteristics ofcommunications systems – in particular (...) in billing and managinguncertainty – and argues that these characteristics underliesuccess or failure in terms of technological ubiquity. Developing a setof characteristics of services rather than a set of services is afundamental break with the tradition of universal service. In fact, theimplications of our proposal is that basic characteristics in theoffering of the service rather than the absolute price are critical toclose the digital divide: certainty of total charge, ability to avoiddeposits or disconnection via best effort service, and payer-basedcontrol of all charges. While all of these principles sound obvious infact none of these hold in the telephony network. Universal service hasevolved from common carriage (serve all with no discrimination) to aright to basic services (100% penetration). Universal service isnow discussed as the digital divide, as the access to information asopposed to services becomes increasingly critical. However, we arediscussing in this paper access to the bits and the network rather thanaccess to the information (or intellectual property) once connected. Theprovision of universal service is seen as a technical problem only in thatthe technology costs money – universal service debates have longbeen the domain of economists. Yet the design of protocols has been thedomain of engineers, the building of systems the corporate domain, andthe discussion of equity the interest of ethicists. The design ofprotocols can define the parameters of the corporate decision-makers,the variables of the economist, and the questions for the ethicist. Thedesign decisions made at the fundamental levels can make communicationsequity more or less likely. In this work I focus on the design ofprotocols for the next generation Internet, protocols which willfundamentally change the best-effort nature of Internet services.Building on the economic and ethnographic work of others I argue thatthe effects of protocols adoption on universal service can be predictedto some degree. By examination of past and current technologies Iexamine a set of technical mechanisms to determine how such mechanismsmight harm or enhance universal service. I define each mechanism (e.g.denial of entry) and offer observations about each particularmechanism''s implicit pricing assumptions. I close with a discussion ofinterest to ethicists and regulators on evaluating communicationsprotocols with respect to universal access. Protocols for developingmultiple qualities of service for packet-switched networks have focusedon economic efficiency (e.g. Mackie-Mason, 1995; Choi, Stahl &Winston, 1997; Shapiro & Varian, 1998), billing to encouragewidespread adoption of network innovations (e.g. Xie & Sirbu, 1985)and billing in a manner consistent with the underlying network (e.g.Clark, 1996). Here we examine a set of protocols which include varyingquality of service mechanisms with respect to the compatibility of theprotocols with universal access. (shrink)

Efforts towards adaptation, dissemination, and implementation of culturally robust, evidence-informed mental health care rely on community-engaged research. Academic-community partnerships help bring science to service for vulnerable and historically disenfranchised populations. A growing literature supports the development of a framework of ethics for CEnR. This article examines ethical tensions in the context of the American Psychological Association Ethics Code General Principles – Beneficence and Nonmaleficence; Fidelity and Responsibility; Integrity; Justice; and Respect for People’s Rights and Dignity – and presents the 4R (...) action plan to support application of APA guidelines to academic-community partnership with youth-serving organizations. (shrink)

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations (...) by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants’ perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a “helpful” or “very helpful” tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors’ knowledge this is the first investigatation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments. (shrink)

What causes adolescents to develop consumer’ ethical beliefs? Prior research has largely focused on the negative influence of peers and negative patterns of parent–child interactions to explain risky and unethical consumer behaviors. We take a different perspective by focusing on the positive support of parents and peers in adolescent social development. An integrative model is developed that links parental and peer support with adolescents’ self-worth motives, their materialistic tendencies, and their consumer ethical beliefs. In a study of 984 adolescents, we (...) demonstrate support for a sequential mediation model in which peer and parental support is positively related to adolescents’ self-esteem and feelings of power, which are each associated with decreased materialism as a means of compensating for low self-worth. This reduced materialism is, in turn, associated with more ethical consumer beliefs. (shrink)

Patient advocacy organizations provide patient- and caregiver-oriented education, advocacy, and support services. PAOs are formally organized nonprofit groups that concern themselves with medical conditions or potential medical conditions and have a mission and take actions that seek to help people affected by those medical conditions or to help their families. Examples of PAOs include the American Cancer Society, the National Alliance on Mental Illness, and the American Heart Association. These organizations advocate for, and provide services to, millions of people with (...) physical and mental conditions — such as cancer, mental illness, diabetes, and cardiovascular disease — via their outreach, meetings, counseling, websites, and published materials. A PAO usually seeks to raise public awareness of a disease’s symptoms, risk factors, and treatment options and promotes research to cure or to prevent that disease. (shrink)

Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates that (...) bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust. (shrink)

Well-designed pragmatic clinical trials (PCTs) are critical for improving healthcare delivery and patient outcomes (Haff and Choudhry 2018), and the article written by Garland et al. (2023) advance...

Must a society aim indefinitely for continued economic growth? Proponents of economic growth advance three central challenges to the idea that a society, having attained high levels of income and wealth, may justly cease to pursue further economic growth: if environmentally sustainable and the gains fairly distributed, first, continued economic growth could make everyone within a society and globally, and especially the worst off, progressively better off; second, the pursuit of economic growth spurs ongoing innovation, which enhances people’s opportunities and (...) protects a society against future risks; and third, continued economic growth fosters attitudes of openness, tolerance, and generosity, which are essential to the functioning of a liberal democratic society. This article grants these challenges’ normative foundations, to show that, even if one accepts their underlying premises as requirements of justice, a society may still justly cease to aim for economic growth, so long as it continues to aim for and realize gains on other dimensions. I argue that, while continued economic growth might instrumentally serve valuable ends, it is not necessary for their realization, as a society can achieve these ends through other means. (shrink)

We consider the relation between past and future events from the perspective of the constructive episodic simulation hypothesis, which holds that episodic simulation of future events requires a memory system that allows the flexible recombination of details from past events into novel scenarios. We discuss recent neuroimaging and behavioral evidence that support this hypothesis in relation to the theater production metaphor.

An ethnographic field study about the informed consent process in investigational drug trials for seriously ill persons with hepatitis C suggests that nurses and physicians referred to these trials as giving treatment, even though they involved placebos. Interview data and informed consent documents contained frequent references to the term `treatment trial' or `treatment'. Although these findings were unexpected and not the original focus of our study, we consider them in the light of an extensive literature on the `therapeutic misconception' that (...) has been described among physicians and patients with AIDS and other serious illnesses. We also suggest that certain organizational and professional characteristics of nursing and medicine reinforce this tendency to refer to the trials as treatment. Implications for further research are provided. (shrink)

Volume 20, Issue 3, March 2020, Page 21-24.

Individuals often face administrative hurdles in attempting to access health care, public programmes, and other legal statuses and entitlements. These ordeals are the products, directly or indirectly, of institutional and policy design choices. I argue that evaluating whether such ordeals are justifiable or desirable instruments of social policy depends on assessing, beyond their targeting effects, the process-related burdens they impose on those attempting to navigate them and these burdens’ distributive effects. I here examine specifically how ordeals that levy time costs (...) reduce and constrain individuals’ free time, and how such time-cost ordeals may thereby create, deepen and compound disadvantages. (shrink)

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this essay, we (...) discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient. (shrink)

Many critics of the legalization of physician‐assisted death oppose it in part because they fear it will further disadvantage those who are already economically disadvantaged. This argument points to a serious problem of how economic considerations can influence medical decisions, but in the context of PAD, the concern is not borne out. We will provide empirical evidence suggesting that concerns about money influence medical decisions throughout the full course of illness, but at the end of life, financial pressure is much (...) more likely to influence a decision to pursue or reject aggressive life‐extending care than it is to influence a request for PAD. We will also address the question of whether financial pressure as a result of being poor—particularly in the context of an inadequate social safety net—robs people of their autonomy, rendering their informed request and consent invalid. We argue that it does not. We will emphasize the impracticality and injustice of rejecting the role of poverty as a legitimate factor in decision‐making, the irrational distinction between PAD and withdrawal of life‐sustaining care, and the more appropriate focus on the great flaws in the American health care system. (shrink)

Transplantation research on samples and organs from deceased donors in England, Wales and Northern Ireland is under threat. The key problems relate to difficulties encountered in gaining consent for research projects, as distinct from consent to donation for clinical transplantation. They are due partly to the terms of the Human Tissue Act 2004 (the 2004 Act), and partly to its interpretation by the Human Tissue Authority (HTA). They include excessive interaction with donor representatives regarding ‘informed consent’ to research projects, uncertainty (...) as to the scope and duration of a donor's ‘authority’ over an organ, and restrictions caused by the apparent need for licensing of transplantation research under the 2004 Act, combined with lack of certainty, or guidance, as to the distinction between ‘research’, which requires a licence, and ‘service development’, which does not. In our view this confusion hinders and deters Specialist Nurses for Organ Donation in approaching donor representatives and discussing possible research projects with them. It has also, as we have reported elsewhere, led to abandonment of research projects for fear of liability, despite both Research Ethics Committee (REC) approval and donor consent. Such problems do not seem to occur under the transplant laws of most other comparable jurisdictions. The Transplantation Ethics Symposium, ‘The ethics of organ retrieval: goals, rights and responsibilities’, hosted by the MRC Centre for Transplantation at King's College London in December 2010, revealed that many senior clinicians and researchers, administrators, and lawyers are both unclear and in disagreement concerning the effects of the 2004 Act and the extent to which it is adhered to or ignored in practice. In this paper we examine the difficulties encountered and suggest solutions based on a less restrictive interpretation of the 2004 Act, or, more probably, a regulatory change under its authority. We propose that, in the long term, a law which includes consent for REC-approved research within the general consent for organ donation and transplantation seems preferable to the present system, both ethically and in practical terms. (shrink)

Several contemporary scholars have embraced the aesthetic resources in the Black Radical Tradition for the purpose of revitalizing the democratic project. Ironically, however, many drawn to the radical potential of fugitive escape are concerned about flight or exodus from the democratic project itself resulting in a defense of politics that constricts the possible benefits of fugitive aesthetics for democratic life. This article draws on the work of Alain Locke, a key figure of the Harlem Renaissance, to suggest another way in (...) which we might follow Black fugitive aesthetics. Through an engagement with Locke, I theorize the notion of a fugitive bearing associated with a set of sensibilities that we might cultivate in order to approach the task of democratic transformation as a “reverent vandalism.” This article also challenges dismissive readings of Locke’s aestheticism by closely reexamining his commitment to expressive autonomy in connection with his theory of democracy. His “New Negro” avant-garde, like the fugitive, remains tethered to political life even while seeking a freedom that is unavailable within the strictures of the standing normative order. (shrink)

Recent decades have seen a dramatic transformation in the mode of governing, with government increasingly outsourced to a network of private actors, spanning education, prisons, regulation, arbitration, the military, and access to healthcare and welfare. Chiara Cordelli’s The Privatized State probes the ethical and philosophical questions raised by this transformation, and develops a distinctive account of the wrong of privatization: that a privatized government cannot be a legitimate government. In so doing, Cordelli engages and advances not only pressing questions about (...) privatization, but also broader questions about public administration, political representation, democratic authority, and neorepublicanism. This symposium brings together scholars for a wide-ranging discussion of this transformation in governance and the deep and challenging questions it raises. (shrink)

Background: Legislation on physician-assisted suicide is being considered in a number of states since the passage of the Oregon Death With Dignity Act in 1994. Opinion assessment surveys have historically assessed particular subsets of physicians.Objective: To determine variables predictive of physicians’ opinions on PAS in a rural state, Vermont, USA.Design: Cross-sectional mailing survey.Participants: 1052 physicians licensed by the state of Vermont.Results: Of the respondents, 38.2% believed PAS should be legalised, 16.0% believed it should be prohibited and 26.0% believed it should (...) not be legislated. 15.7% were undecided. Males were more likely than females to favour legalisation . Physicians who did not care for patients through the end of life were significantly more likely to favour legalisation of PAS than physicians who do care for patients with terminal illness . 30% of the respondents had experienced a request for assistance with suicide.Conclusions: Vermont physicians’ opinions on the legalisation of PAS is sharply polarised. Patient autonomy was a factor strongly associated with opinions in favour of legalisation, whereas the sanctity of the doctor–patient relationship was strongly associated with opinions in favour of not legislating PAS. Those in favour of making PAS illegal overwhelmingly cited moral and ethical beliefs as factors in their opinion. Although opinions on legalisation appear to be based on firmly held beliefs, approximately half of Vermont physicians who responded to the survey agree that there is a need for more education in palliative care and pain management. (shrink)

Machiavelli consistently advises that well-ordered republics must ‘keep their citizens poor’. Although this maxim recurs throughout the Discourses, Machiavelli never directly elaborates on what this prescription for civic poverty requires. To the limited extent that this maxim has received critical examination, it is commonly regarded as contending that citizens must live in a condition of material austerity. Through an analysis of Machiavelli's writings on the German free cities, this article challenges this interpretation and argues that rather than requiring that citizens (...) live at some particular level of poverty, the maxim instead requires only that citizens maintain certain attitudes towards poverty and wealth. (shrink)

Lukas J. Meier et al. offer the promise of a pathway for resolving clinical bioethical problems using an artificial intelligence interface. The ultimate goal, we assume, is...

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving (...) the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work. (shrink)

Rare copy number variants have a prominent role in the aetiology of schizophrenia and other neuropsychiatric disorders. Substantial risk for schizophrenia is conferred by large CNVs at several loci, including microdeletions at 1q21.1, 3q29, 15q13.3 and 22q11.2 and microduplication at 16p11.2. However, these CNVs collectively account for a small fraction of cases, and the relevant genes and neurobiological mechanisms are not well understood. Here we performed a large two-stage genome-wide scan of rare CNVs and report the significant association of copy (...) number gains at chromosome 7q36.3 with schizophrenia. Microduplications with variable breakpoints occurred within a 362-kilobase region and were detected in 29 of 8,290 patients versus 2 of 7,431 controls in the combined sample. All duplications overlapped or were located within 89 kilobases upstream of the vasoactive intestinal peptide receptor gene VIPR2. VIPR2 transcription and cyclic-AMP signalling were significantly increased in cultured lymphocytes from patients with microduplications of 7q36.3. These findings implicate altered vasoactive intestinal peptide signalling in the pathogenesis of schizophrenia and indicate the VPAC2 receptor as a potential target for the development of new antipsychotic drugs. © 2011 Macmillan Publishers Limited. All rights reserved. (shrink)

Résumé Les liens psyché-soma retiennent toute l’attention au cours des premiers mois de la vie. Le bébé, placé sous la dépendance étroite de ses parents, bénéficie de soins et d’une attention la plupart du temps adaptés, mais il faut pouvoir prendre en compte le travail psychique que réalisent les parents pour parer à ses états de tension et d’excitation. Ainsi, pour le bébé dont l’organisation psychique est en cours de développement, le système pare-excitation maternel et plus largement parental joue un (...) rôle central dans le développement psychosomatique. La présentation d’une situation clinique permet d’illustrer les propos de l’auteur, de mesurer l’importance du système pare-excitation parental durant les premiers mois de la vie et ses effets, au sein des régulations précoces, en cas de défaillance. (shrink)

Introduction While quizzing during informed consent for research to ensure understanding has become commonplace, it is unclear whether the quizzing itself is problematic for potential participants. In this study, we address this issue in a multinational HIV prevention research trial enrolling injection drug users in China and Thailand. Methods Enrolment procedures included an informed consent comprehension quiz. An informed consent survey followed. Results 525 participants completed the informed consent survey (Heng County, China=255, Xinjiang, China=229, Chiang Mai, Thailand=41). Mean age was (...) 33 and mean educational level was 8 yrs. While quizzing was felt to be a good way to determine if a person understands the nature of clinical trial participation (97%) and participants did not generally find the quiz to be problematic, minorities of respondents felt pressured (6%); anxious (5%); bored (5%); minded (5%); and did not find the questions easy (13%). In multivariate analysis, lower educational level was associated with not minding the quizzing (6–10 yrs vs 0–5 yrs: OR=0.27, p=0.03; more than 11 yrs vs 0–5 yrs: OR=0.18, p=0.03). There were also site differences (Heng County vs Xinjiang) in feeling anxious (OR=0.07; p=<0.01), not minding (OR=0.26; p=0.03), being bored (OR=0.25; p=0.01) and not finding the questions easy (OR=0.10; p=<0.01). Conclusions Quizzing during the informed consent process can be problematic for a minority of participants. These problems may be associated with the setting in which research takes place and educational level. Further research is needed to develop, test and implement alternative methods of ensuring comprehension of informed consent. Trial Registration clinicaltrials.gov number NCT00270257. (shrink)