Malm and colleagues (2008) consider (and reject) five arguments putatively justifying the idea that healthcare workers (HCWs) have a duty to treat (DTT) during a pandemic. We do not have sufficient...

We concur with Baum and colleagues (2009) on the importance of pandemic planners taking explicit steps to employ public engagement methodologies. Thus far, as Baum and colleagues note, there have b...

A twenty‐person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise.

American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines (...) conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other. (shrink)

The “lone” clinical bioethicist working in a large, multisite hospital faces considerable challenges. While attempting to build ethics capacity and sustain a demanding range of responsibilities, he or she must also achieve an acceptable level of integration, sustainability, and accountability within a complex organisational structure. In an effort to address such inherent demands and to create a platform towards better evaluation and effectiveness, the Clinical Ethics Group at the Joint Centre for Bioethics at (...) the University of Toronto is implementing the Hub and Spokes Strategy at seven hospitals. The goal of the Hub and Spokes Strategy is to foster an ethical climate and strengthen ethics capacity broadly throughout healthcare settings as well as create models in clinical bioethics that are excellent and effective. (shrink)

The literature fails to reflect general agreement over the nature of the services and procedures provided by bioethicists, and the training and core competencies this work requires. If bioethicists are to define their activities in a consistent way, it makes sense to look for common ground in shared communities of practice. We report results of a survey of the services and procedures among bioethicists affiliated with the University of Toronto Joint Centre for Bioethics (JCB). This is the (...) largest group of bioethicists working in healthcare organizations in Canada. The results suggest there are many common services and procedures of JCB bioethicists. This survey can serve as a baseline for further exploration of the work of JCB bioethicists. Common practices exist with respect to the domains of practice, individual reporting relationships, service availability within business hours and the education and training of the bioethicist. (shrink)

A major strength of this capacity building programme is that it encourages cross-cultural considerations in the application of research ethics principles to research in developing countries.

Background: The conditions of the emergency create an unprecedented, but legitimate approach, when the rights and freedoms of the individual can be limited in the public interest. From the first days of the pandemic, a special social group of the population began to stand out, with the code name "65+". Aim: to give an ethical assessment of the attitude of society to the population group "65+", to show the contradiction between medical and bioethical approaches to the criteria (...) for selecting a group. Materials and methods: The review of fundamental and modern works in the problem field was carried out. The empirical basis of the work was the materials of a sociological survey using Google forms. Results: According to the analysis of statistical indicators of employment in the Russia before the pandemic, the share of employees aged 60–64 years was 32,4 %, in the range of 65–69 years – 13,7% of the size of the age group, which indicates the high social activity of the 65+ group and demonstrates the labor potential of the group. At the same time, anti-epidemic measures related to restrictions on labor and social activity primarily affected this group, which led to stigmatization based on the age criterion. The long-term confrontation with the pandemic has weakened the psychological tactics of treating older patients that have not been fully developed in the national health care, based on the ethics of care. A survey of medical students conducted in March 2021 showed that the majority of respondents viewed restrictions as unacceptable discrimination. Conclusion: The review of updated research and the analysis of the current situation have shown that the phenomenon of the aging of the nation and the vulnerability of the older age group of the population to a new coronavirus infection have led to a contradiction in approaches to the considered age group from the standpoint of medicine and bioethics. The inherently humane measure of protection for a group that is especially vulnerable in terms of medical indicators began to be perceived by the society as a reason for stigmatization. The solution to the dilemma is possible in the context of the convergence of medical and human sciences in the interdisciplinary problem field of gerontology and geriatrics. (shrink)

Sunnybrook Health Sciences Centre, Toronto and University of Toronto Ross E. G. Upshur * Sunnybrook Health Sciences Centre, Joint Centre for Bioethics University of Toronto, Toronto * Corresponding author: Ross E. G. Upshur, Primary Care Research Unit, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, #E-349, Toronto, Ontario, Canada M4N 3M5. Tel.: 416-480-4753; Fax: 416-480-4536; Email: ross.upshur{at}sunnybrook.ca ' + u + '@' + d + ' '//--> Abstract Are restrictive measures and duties to care ethically (...) reasonably acceptable to faith-based organizations? This study describes the perceptions of individually interviewed spiritual leaders of the disease control measures used during the recent SARS outbreak in Toronto. Four central themes were identified: the relationship between religious obligation and civic responsibilities; the role of faith-based organizations in supporting public health restrictive measures; the reciprocal obligations of public health and religious communities during restrictions; and justifiable limits to duties to care. We conclude that, within certain constraints, spiritual leaders find restrictive measures ethically reasonable and that spiritual leaders can play an important role during pandemic and epidemic control planning. Public health officials should therefore include them in the early and ongoing deliberations of the criteria and logistics for implementation during public health emergencies. CiteULike Connotea Del.icio.us What's this? (shrink)

The Covid-19 pandemic necessitated a shift to online teaching of bioethics, a field that relies on discourse and interactive teaching methods. This paper aims to highlight the challenges faced and lessons learned while describing the experience of having to shift to teaching bioethics online to students enrolled in the Postgraduate Diploma in Biomedical Ethics (PGD) and Master of Bioethics programs at the Centre of Biomedical Ethics and Culture (CBEC) in Pakistan. Opinions of students, (...) mainly compromising mid-career healthcare related professionals, were obtained through a survey (n = 13) and an in-depth group discussion via Zoom. Observations from core faculty (n = 7) were recorded through conducting a content analysis of monthly faculty meetings, enhanced by faculty narratives published in the Centre’s bi-annual newsletter. Faculty and students alike expressed unease with the online mode since it minimized chances of interaction with peers and faculty thus negatively affecting learning process. Juggling work responsibilities while taking synchronous online classes proved to be difficult for students particularly for clinicians, with unique issues for women. Faculty faced increased workload due to the necessity for development of innovative teaching methods and new assessment tools in order to maintain the standard of the academic programs. Despite the problems surrounding the online mode, students and faculty also acquired new skills during this period. Overall, there was a clear preference for on-campus learning, however against the backdrop of a pandemic, online mode was considered as the only viable option. (shrink)

Like COVID-19, new infectious disease outbreaks emerge almost annually, and studies predict that this trend will continue due to a variety of factors, including an aging population, ease of travel, and globalization of the economy. In response to episodic public health crises, governments and organizations develop, implement, and enforce policies, procedures, protocols, and programs. The epidemiological triad is both a model of disease causation and fundamentally used to design and deploy such control measures. Here we adapt this model to the (...) workplace setting and use the epidemiological triad to characterize the related ethical challenges in implementing the control measures employers face as a guide for a workplace intervention framework. Through this approach, our aim is to show how an integrated ethical framework, grounded in epidemiological principles, has important implications for how we categorize, understand, and resolve the difficult decisions that emerge in the workplace under pandemic conditions. (shrink)

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of (...) ethical and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families. (shrink)

BackgroundThere are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint (...) class='Hi'>Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds.DiscussionThe top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill.SummaryAlthough many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge. (shrink)

Bioethics experts played a key role in ensuring a coherent ethical response to the COVID-19 pandemic in the fields of healthcare, public health, and scientific research in Canada. In the province of Quebec, a group of academic and practicing bioethicists met periodically in the early months of the pandemic to discuss approaches and solutions to ethical dilemmas encountered during the crisis. These meetings created the opportunity for a national survey of bioethics practitioners from different fields. (...) The survey, in which forty-five Canadian bioethics practitioners (clinical ethicists, ethicist members of REBs and government health policy ethicists, or any bioethicist practicing outside of academia) participated, explored their concerns, challenges and opportunities during the first wave of the pandemic, with the objective of informing bioethics research about the difficulties experienced by bioethicists “in the field”. Participants reported increased stress levels, increased workloads, and a greater proportion of their work being devoted to public health ethics. Most of their concerns focused on groups other than themselves, such as health professionals, patients, research participants, and people in vulnerable socio-economic situations. An optimism about the future of bioethics was noted due to an increased awareness of the importance of bioethics by the public and by health and research institutions. (shrink)

On March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and (...) medical technicality. The working party met five times over the following week and then submitted a draft Framework for consideration by two groups of intensivists and one group of academic ethicists. It was also presented to a panel on a national current affairs programme. The Framework was then revised on the basis of feedback from these sources and made publicly available online on April 3, ten days after the initial meeting. The framework is published here in full to stimulate ongoing discussion about rapid development of user-friendly clinical ethics resources in ongoing and future pandemics. (shrink)

The disability viewpoint is the fundamental for understanding social justice in a given population. Disability rights need to be obeyed in the inclusive preparedness and response to all the disasters or during the crisis period including COVID-19 pandemic. COVID-19 pandemic jeopardized the health and rehabilitation services globally. The impact is much more in low resource developing countries like Bangladesh. In general, people with disability (PWD) suffer from multiple medical and rehabilitation complications and they need frequent rehabilitation consultations or (...) hospital admissions in comparison to people without disability. As a developing country, Bangladesh has poor ratios of doctors, nurses and technologists of 1:0.4:0.24 (WHO: 1:3:5) to face the COVID-19 challenge. Rehabilitation services have been disrupted in almost two-thirds (63%) of countries of the world. Even though rehabilitation is the key to recovery following severe illness from COVID-19. There are many concerns and debates about the preparedness, response and mitigation the process of COVID-19 on the part of the national government. According to recent study reports, the lives of about 100% of PWD have been impacted by the COVID-19 pandemic. COVID-19 National Technical Advisory Committee is working for strategic planning, response and mitigation process but omission of a representative of PWD or a rehabilitation physician in the committee has created much dissatisfaction. The difficult COVID-19 testing process due to country wide shutdown of rehabilitation essential services and central pulling of rehabilitation physicians have side lined the PWD inclusiveness. It is expected that the rehabilitation preparedness, response and mitigation of the pandemic should be based on an ethics driven process. (shrink)

Background There are numerous ethical challenges that can impact patients and families in the health care setting. This paper reports on the results of a study conducted with a panel of clinical bioethicists in Toronto, Ontario, Canada, the purpose of which was to identify the top ethical challenges facing patients and their families in health care. A modified Delphi study was conducted with twelve clinical bioethicist members of the Clinical Ethics Group of the University of Toronto Joint (...) Centre for Bioethics. The panel was asked the question, what do you think are the top ten ethical challenges that Canadians may face in health care? The panel was asked to rank the top ten ethical challenges throughout the Delphi process and consensus was reached after three rounds. Discussion The top challenge ranked by the group was disagreement between patients/families and health care professionals about treatment decisions. The second highest ranked challenge was waiting lists. The third ranked challenge was access to needed resources for the aged, chronically ill, and mentally ill. Summary Although many of the challenges listed by the panel have received significant public attention, there has been very little attention paid to the top ranked challenge. We propose several steps that can be taken to help address this key challenge. (shrink)

In an age of global capitalism, pandemics, far-flung biobanks, multinational drug trials and telemedicine it is impossible for bioethicists to ignore the global dimensions of their field. However, if they are to do good work on the issues that globalisation requires of them, they need theoretical resources that are up to the task. This paper identifies four distinct understandings of ‘globalised’ in the bioethics literature: a focus on global issues; an attempt to develop a universal ethical theory that can (...) transcend cultural differences; an awareness of how bioethics itself has expanded, with new centres and journals emerging in nearly every corner of the globe; a concern to avoid cultural imperialism in encounters with other societies. Each of these approaches to globalisation has some merit, as will be shown. The difficulty with them is that the standard theoretical tools on which they rely are not designed for cross-cultural ethical reflection. As a result, they leave important considerations hidden. A set of theoretical resources is proposed to deal with the moral puzzles of globalisation. Abandoning idealised moral theory, a normative framework is developed that is sensitive enough to account for differences without losing the broader context in which ethical issues arise. An empirically nourished, self-reflexive, socially inquisitive, politically critical and inclusive ethics allows bioethicists the flexibility they need to pick up on the morally relevant particulars of this situation here without losing sight of the broader cultural contexts in which it all takes place. (shrink)

Objectives During the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics. Design A multi-centre service evaluation was performed through a survey of consultant paediatricians working within the (...) North Thames Paediatric Network, a group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues. Results Survey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government ‘stay at home’ advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns. Conclusion Consultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children. (shrink)

This symposium contribution presents three vignettes of resistance to COVID-19 public health measures in Alberta, Canada, where I live. These show resolutely individualistic attitudes toward health and a desire to understand the pandemic as a one-off aberration. I then suggest four ways that the work of bioethics needs to change. These begin with situating the pandemic within the context of global climate emergency and end with how a new polarization diminishes possibilities for the rational dialogue that (...) class='Hi'>bioethics has here-to-fore assumed people would engage in. (shrink)

The experiences of working-class people and those from communities of color seeking abortions in the United States before and during COVID-19 call for feminist, relational pandemic ethics. Françoise Baylis and colleagues argue for public health ethics that emphasize relational personhood, relational autonomy, social justice, and solidarity. COVID-19 abortion bans in the United States require vigilance against powerful actors who abuse these values—particularly that of solidarity—to further their political, religious, and/or economic agendas in harmful ways. Thus, efforts (...) to promote solidarity during a pandemic must attend to social injustice and systemic oppression and provide resources to vulnerable people. (shrink)

Technological developments involving robotics and artificial intelligence devices are being employed evermore in elderly care and the healthcare sector more generally, raising ethical issues and practical questions warranting closer considerations of what we mean by “care” and, subsequently, how to design such software coherently with the chosen definition. This paper starts by critically examining the existing approaches to the ethical design of care robots provided by Aimee van Wynsberghe, who relies on the work on the ethics of care by (...) Joan Tronto. In doing so, it suggests an alternative to their non-principled approach, an alternative suited to tackling some of the issues raised by Tronto and van Wynsberghe, while allowing for the inclusion of two orientative principles. Our proposal centres on the principles of autonomy and vulnerability, whose joint adoption we deem able to constitute an original revision of a bottom-up approach in care ethics. Conclusively, the ethical framework introduced here integrates more traditional approaches in care ethics in view of enhancing the debate regarding the ethical design of care robots under a new lens. (shrink)

Responding to a major pandemic and planning for allocation of scarce resources under crisis standards of care requires coordination and cooperation across federal, state and local governments in tandem with the larger societal infrastructure. Maryland remains one of the few states with no state-endorsed ASR plan, despite having a plan published in 2017 that was informed by public forums across the state. In this article, we review strengths and weaknesses of Maryland’s response to COVID-19 and the role of the (...) Maryland Healthcare Ethics Committee Network in bridging gaps in the state’s response to prepare health care facilities for potential implementation of ASR plans. Identified “lessons learned” include: Deliberative Democracy Provided a Strong Foundation for Maryland’s ASR Framework; Community Consensus is Informative, Not Normative; Hearing Community Voices Has Inherent Value; Lack of Transparency & Political Leadership Gaps Generate a Fragmented Response; Pandemic Politics Requires Diplomacy & Persistence; Strong Leadership is Needed to Avoid Implementing ASR … And to Plan for ASR; An Effective Pandemic Response Requires Coordination and Information-Sharing Beyond the Acute Care Hospital; and The Ability to Correct Course is Crucial: Reconsidering No-visitor Policies. (shrink)

We live in an era where our health is linked to that of others across the globe, and nothing brings this home better than the specter of a pandemic. This paper explores the findings of town hall meetings associated with the Canadian Program of Research on Ethics in a Pandemic , in which focus groups met to discuss issues related to the global governance of an influenza pandemic. Two competing discourses were found to be at work: (...) the first was based upon an economic rationality and the second upon a humanitarian rationality. The implications for public support and the long-term sustainability of new global norms, networks, and regulations in global public health are discussed. (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)

Background: The research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy. Methods: We surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give (...) consideration to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores. Results: Ethics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery. Conclusions: The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND. (shrink)

Mental disorders in university students are very frequent, therefore higher education institutions have established in-campus mental healthcare centres. These clinics have particular characteristics that differ from other mental health centres, as they report to and represent an educational institution, while at the same time looking after the interests and well-being of patients requesting assistance, thus generating unique bioethical conflicts. Ethics Committees are useful tools to offer support to mental health professionals in making ethical decisions. In order to respond to (...) these issues, it was decided that an Ethics Committee would be created in the mental health clinic of a private university in Mexico City. This article describes the implementation process for this Committee, its duties and scope, as well as the case work and review methodology. A list of the most frequent ethical conflicts is attached, jointly with the ethical analysis of the cases treated throughout the year and a half or work by the Committee. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Bioethics ConsultationPat Milmoe McCarrick (bio)(John La Puma, M.D., from the Department of Medicine at Lutheran General Hospital in Chicago, contacted the National Reference Center for Bioethics Literature and suggested bioethics consultation as a topic for the Scope Note Series. He provided an extensive list of citations about ethics consultations collected by him and by David Schiedermayer, M.D., for their new book Ethics Consultation: A (...) Practical Guide.)In Ethics Consultation in Health Care, editors John Fletcher, Norman Quist, and Albert R. Jonsen (I, 1989) define ethics consultation as "the provision of specialized help in identifying, analyzing, and resolving ethical problems that arise in clinical care. In medical ethics the area of consultation has grown rapidly since 1978 when Edmund D. Pellegrino (II, 1978) noted, "we cannot separate technical-moral decisions from the philosophic principles we use to justify them. Medicine and ethics must be engaged with each other at every level."In 1980 Albert Jonsen raised the question of whether an ethicist could be a consultant and said that the ethicist as consultant is a casuist, one whose moral reasoning is based on a system of reasoning that is applied to particular cases. He describes historical casuistry in Western culture, comparing it to modern moral philosophy, and suggests that a "new casuistry seems timely" for ethics consultation (II, Jonsen 1980). By 1984 ethicist Ruth Purtilo recorded her thoughts following an ethics consultation. She raised questions about the ethicist's place on a hospital staff and how to make that role appropriate and beneficial to all concerned, saying that "the ethicist retreats after the consultation; under no circumstances would the outcome of an ethics consultation be that the ethicist became the primary care giver or assumed ongoing responsibility for the clinical management of a case" (II, Purtilo 1984). Nevertheless, in 1992 two physician-ethicists who had been called as ethics consultants for a patient who had requested that he be removed from his ventilator reported that they became the persons who turned off the ventilator and administered the drugs that eased his dying (II, Edwards and Tolle 1992).In recognition of the growing number of persons identifying themselves as [End Page 433] consultants, the Society for Bioethics Consultation was founded in October 1985 as a professional society of persons engaged in bioethics consultation. It encourages and supports consultation, assists in establishing clinical education programs, and raises funds for consultation education. Although the Society has no permanent office, the president (currently, George Kanoti in the Cleveland Clinic Foundation's Bioethics Department) conducts its work and plans an annual meeting.The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) established new criteria concerning ethics in its 1992 Manual (III, JCAHO 1992) and in a special issue of QRB devoted to ethics consultation (I, Defining Quality 1992). These publications undoubtedly have contributed to the increased use of experts in medical ethics. The Manual notes that all organizations seeking accreditation should have some sort of "mechanism for the consideration of ethical issues arising in the care of patients and to provide education to care givers and patients on ethical issues in health care." A health care institution's eligibility for JCAHO accreditation, which is required for federal reimbursement, requires adherence to this specification (III, JCAHO 1992).The new International Directory of Bioethics Organizations provides an index of 129 different groups that indicated to the authors that they offer bioethics consultations. Of these, 83 are in the United States and 46 are in other countries. The ethics consultants included in the directory encompass a broad group of professionals who will assist patients, families, and primary care medical staff in finding solutions to ethical dilemmas resulting from use of new technologies or new treatments in health care. Consultants often come from the health fields: physicians, nurses, and other health personnel, but other professionals are also active as ethics consultants. Lawyers, pastoral counselors, philosophers, and social workers also offer bioethics consultation services (III, Nolen and Coutts 1993).Drs. Siegler, Pellegrino, and Singer wrote in 1990 that "Physician-ethicists and professional ethicists will continue to work side by side in the future. One is not likely to replace the other, nor is this desirable, because... (shrink)

For decades a debate has played out in the literature about who bioethicists are, what they do, whether they can be considered professionals qua bioethicists, and, if so, what professional responsibilities they are called to uphold. Health care ethics consultants are bioethicists who work in health care settings. They have been seeking guidance documents that speak to their special relationships/duties toward those they serve. By approving a Code of Ethics and Professional Responsibilities for Health Care Ethics Consultants, (...) the American Society for Bioethics and Humanities (ASBH) has moved the professionalization debate forward in a significant way. This first code of ethics focuses on individuals who provide health care ethics consultation (HCEC) in clinical settings. The evolution of the code's development, implications for the field of HCEC and bioethics, and considerations for future directions are presented here. (shrink)

In this paper I offer the term “potato ethics” to describe a particular professional rural health sensibility. I contrast this attitude with the sensibility behind urban professional ethics, which often focus on the narrow doctor–patient treatment relationship. The phrase appropriates a Swedish metaphor, the image of the potato as a humble side dish: plain, useful, versatile, and compatible with any main course. Potato ethics involves making oneself useful, being pragmatic, choosing to be like an invisible elf who (...) prevents discontinuity rather than a more visible observer of formal rules and assigned tasks. It also includes actively taking part in everyday disaster-prevention and fully recognizing the rural context as a vulnerable space. This intersectional argument, which emphasizes the ongoing, holistic responsibility of those involved in rural communities, draws on work from the domains of care ethics, relational ethics, pragmatic psychology, feminist ethics of embodiment, social location theory, and reflections on geographical narcissism. (shrink)

The Joint Commission on the Accreditation of Healthcare Organizations (JCAHO) requires as a condition of accreditation that every health care institution -- hospital, nursing home, or home care agency -- have a standing mechanism to address ethical issues. Most organizations have chosen to fulfill this requirement with an interdisciplinary ethics committee. The best of these committees are knowledgeable, creative, and effective resources in their institutions. Many are wellmeaning but lack the information, experience, and skills to negotiate adequately the (...) complex ethical issues that arise in clinical and organizational settings. Handbook for Health Care Ethics Committees is the first resource designed to address the range of work performed by ethics committees as part of their multiple responsibilities, including education, case consultation, and policy development. It features an eight-chapter curriculum reviewing the content of contemporary health care bioethics and discussing the ethical foundations of clinical practice, with each subsequent section focusing on a set of ethical issues that commonly arise in the clinical setting. Through case studies, the authors explore issues such as informed consent and refusal, decision making and decisional capacity, truth telling, decision-making concerns of minors, end-of-life issues, palliation, justice in and access to health care services, and organizational ethics. They offer sample policies and procedures, draft guidelines and protocols, and key legal cases. Providing both a strong theoretical foundation and practical applications, this handbook will be essential reading for every member of a health care ethics committee. (shrink)

As a result of the coronavirus (COVID‐19) pandemic, health professionals are faced with situations they have not previously encountered and are being forced to make difficult ethical decisions. As the first group to experience challenges of caring for patients with coronavirus, Chinese nurses endure heartbreak and face stressful moral dilemmas. In this opinion piece, we examine three related critical questions: Whether society has the right to require health professionals to risk their lives caring for patients; whether health professionals (...) have the right to refuse to care for patients during the coronavirus pandemic; and what obligations there are to protect health professionals? Value of care, community expectations, legal obligations, professional and codes of practice may compel health professionals to put themselves at risks in emergency situations. The bioethical principles of autonomy, justice, beneficence and non‐maleficence, as well as public health ethics, guide nurses to justify their decisions as to whether they are entitled to refuse to treat COVID‐19 patients during the pandemic. We hope that the open discussion would support the international society in addressing similar ethical challenges in their respective situations during this public health crisis. (shrink)

The prospect of using genome technologies to modify the human germline has raised profound moral disagreement but also emphasizes the need for wide-ranging discussion and a well-informed policy response. The Hinxton Group brought together scientists, ethicists, policymakers, and journal editors for an international, interdisciplinary meeting on this subject. This consensus statement formulated by the group calls for support of genome editing research and the development of a scientific roadmap for safety and efficacy; recognizes the ethical challenges involved in (...) clinical reproductive applications of genome editing but, importantly, rejects the idea that human reproductive germline modification is necessarily morally unacceptable; and highlights the importance of meaningful engagement in discussions of genome editing and the development of regulation and oversight mechanisms to govern future uses of such technologies. (shrink)

The social sciences playa variety of multifaceted roles in the policymaking process. So varied are these roles, indeed, that it is futile to talk in the singular about the use of social science in policymaking, as if there were one constant relationship between two fixed and stable entities. Instead, to address this issue sensibly one must talk in the plural about uses of dif ferent modes of social scientific inquiry for different kinds of policies under various circumstances. In some cases, (...) the influence of social scientific research is direct and tangible, and the connection between the find ings and the policy is easy to see. In other cases, perhaps most, its influence is indirect-one small piece in a larger mosaic of politics, bargaining, and compromise. Occasionally the findings of social scientific studies are explicitly drawn upon by policymakers in the formation, implementation, or evaluation of particular policies. More often, the categories and theoretical models of social science provide a general background orientation within which policymakers concep tualize problems and frame policy options. At times, the in fluence of social scientific work is cognitive and informational in nature; in other instances, policymakers use social science primarily for symbolic and political purposes in order to le gitimate preestablished goals and strategies. Nonetheless, amid this diversity and variety, troubling general questions persistently arise. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Editors' Introduction to the Special Issue on the Translational Work of BioethicsElizabeth Lanphier and Larry R. ChurchillRecent essays in Perspectives and Biology and Medicine, including "Can Clinical Ethics Survive Climate Change" by Andrew Jameton and Jessica Pierce and "Ethical Maxims for a Marginally Inhabitable Planet" by David Schenck and Larry R. Churchill, both appearing in the Autumn 2021 issue, inspired conversations between us, among our colleagues, and with (...) various contributors to this symposium. We asked of ourselves and each other: where can, should, or must bioethics as a field go to make what bioethicists know and publish about in the academic literature relevant to public policy decisions, health and technological innovation, and a general public? In other words, where do we, practically speaking, go with our bioethical insights and discoveries to make a tangible impact on issues like climate change—though that is only one of the various topics that the authors in this symposium tackle.This translational work of connecting scholarly innovation back to overt practical innovation is often peripheral to academic bioethics. It is not the work the academy typically recognizes in its credit system. Yet this translational work is becoming a critical, central duty of bioethics for the 21st century, while the kinds of work the academy most valorizes may be the least important at this time. In particular, the need for translational initiatives is increasingly evident as pandemics linger into a new normal, the long history and ongoing impacts of racism become even more evident at institutional levels, and the devastating health implications of global warming emerge. [End Page 515]Bioethicists function in privileged proximity to the deleterious effects of failed health and social policy, as well the interplay between seemingly personal health choices, such as those related to diet or lifestyle, and inequitable conditions that impact the options available to individuals and groups. We are increasingly distressed by what we see from this privileged window into health. The COVID-19 pandemic has made preexisting social and policy inequities impacting health impossible to ignore. At the same time, the patterns of carbon pollution portend health crises of unprecedent severity and magnitude in the near future—and will likely deepen inequities and disparities already occurring between those most contributing to, and those most harmed by, climate change.As a field, bioethics has, since its start, been at the intersection of theory and practice. But it is not sufficient for the field to reside passively at this crossroads. The field must be constantly innovating new byways and highways, new offshoots from existing pathways and connector roads between them, that build out both the theory and practice of bioethics in a mutually innovative relationship to each other. Bioethics does not make sense without attention to the real-world practices and the lived realities of health and care. The practical engagement is what deepens and enriches theory, in ways that are more responsive to the real world in which bioethicists toil. But it also is not enough to merely contribute to the body of bioethics scholarship. The translational bioethics we envision is also about using novel theories and concepts to actively shape practices and realities; it is a bioethics in which theory and practices mutually influence each other, each reaching out to generate and change the other.This collection of essays, drawn from a diverse number of scholars, offers several promising paths forward. The essays were written in the spring of 2022, two years into the COVID-19 pandemic, two years after the murder of George Floyd and international attention to the movement for Black lives, and for the most part in the weeks just prior to a set of US Supreme Court decisions with enormous impacts on health, including the June 24 Dobbs v. Jackson Women's Health Organization and the June 30 West Virginia v. EPA decisions.The authors are diverse in age, spheres of work, discipline, sex, race, and ethnicity. They expand our vision for what bioethics can and should be. While we have grouped the essays by subject matter, most of the pieces speak to the field as a whole and invite cross-fertilization. We hope readers will find new ideas, old ideas... (shrink)

This article featuring India constitutes one of five articles in a collection of essays on local capacity-building in research ethics by graduates from the University of Toronto’s Joint Centre for Bioethics MHSc in Bioethics, International Stream program funded by the Fogarty International Center for Advanced Study in the Health Sciences. Research ethics is a growing area of work and interest in India. Ethics review remains the weakest component in the mechanism of good clinical (...) practice, and there is a severe dearth of professionals trained in ethics who can provide leadership. Although the Indian Good Clinical Practice Guidelines, the Indian Medical Council Act, and the Drugs and Cosmetics Act require that the Indian Council of Medical Research’s ethical guidelines be followed as a mandatory requirement for physicians who conduct research, there is a pervasive lack of awareness of basic requirements guiding the ethical conduct of research. There is a great need to strengthen India’s research ethics capacity and regulatory framework for research. (shrink)

This article featuring Ghana constitutes one of five articles in a collection of essays on local capacity-building in research ethics by graduates from the University of Toronto’s Joint Centre for Bioethics MHSc in Bioethics, International Stream programme funded by the Fogarty International Center for Advanced Study in the Health Sciences (FIC). Although there are no national ethical guidelines in Ghana, eight research ethics committees have been established in the country, with a number of them (...) obtaining Federal Wide Assurances (FWA) from the United States Office for Human Research Protections (OHRP).However, the existing ethics committees cannot match the volume of work to be done, especially in light of the increase of research activities in the country. This calls for the need to train more people in research ethics to fill that gap and provide continuing education to members of research ethics committees in the country. (shrink)

Both articles in the November‐December 2021 issue of the Hastings Center Report reflect bioethics’ growing interest in questions of justice, or more generally, questions of how collective interests constrain individual interests. Hugh Desmond argues that human enhancement should be reconsidered in light of developments in the field of human evolution. Contemporary understandings in this area lead, he argues, to a new way of thinking about the ethics of enhancement—an approach that replaces personal autonomy with group benefit as (...) the primary criterion for deciding what enhancements are acceptable. In the second article, Johannes Kniess considers the many attempts within bioethics to draw on John Rawls's work to discuss health care access and social determinants of health, and he comes across as moderately optimistic that Rawls's theory of justice has ongoing relevance. (shrink)

In July 1993, the Scottish Highlands Centre for Human Caring sponsored a conference with the title Exploring the Spirituality in Caring. The papers given at the conference and included in this volume are offered as a contribution to the debate that must take place in nursing and in the wider context of health care provision. Ann Bradshaw's paper puts the debate in context arguing that nursing is fundamentally a loving response to the human being created in the image of (...) God. (shrink)

OBJECTIVE: To describe the issues faced, and how they were addressed, by the University of Toronto Critical Care Medicine Program/Joint Centre for Bioethics Task Force on Appropriate Use of Life-Sustaining Treatment. The clinical problem addressed by the Task Force was dealing with requests by patients or substitute decision makers for life-sustaining treatment that their healthcare providers believe is inappropriate. DESIGN: Case study. SETTING: The University of Toronto Joint Centre for Bioethics/Critical Care Medicine Program Task (...) Force on Appropriate Use of Life-Sustaining Treatment. PARTICIPANTS: The 24-member Task Force included physician and nursing leaders from five critical care units, bioethicists, a legal scholar, a health administration expert, a social worker, and a hospital public relations professional. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Our specific lessons learned include a) a policy focus on process; b) use of a negotiation and mediation model, rather than a hospital ethics committee model, for this process; and c) the policy development process is itself a negotiation, so we recommend equal involvement of interested groups including patients, families, and the public. CONCLUSIONS: This article describes the key issues faced by the Task Force while developing its policy. It will provide a useful starting point for other groups developing policy on appropriate use of life-sustaining treatment. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Working on the Clinton Administration's Health Care Reform Task ForceNancy Neveloff Dubler (bio)This narrative is based on my understanding of the elements of the Health Security Act that may have ethical implications. I have reconstructed these elements from my experience on the Health Care Reform Task Force and they are part of the health care plan that the President presented to Congress. (At the time this article went (...) to press, the actual legislation, which should answer my remaining specific questions more clearly, had not yet been released.) I perceive the most important features of the plan to be:• The legislation will create a "right" to health care for all citizens—access to care will be universal;• The plan will involve some form of managed competition in which groups of providers (called Approved or Accredited Health Plans (AHPs)) will offer comparable benefit packages at slightly (or widely) different costs;• The AHPs will negotiate with the Health Alliance (HA) to determine the price that they will charge their consumer-patients;• There will be open enrollment with no barriers to coverage, such as exclusions for pre-existing conditions;• Community rating will be in effect in different localities and enrolled persons in any AHP will pay the same premium;• The coverage for any enrolled person will be portable;• The overall structure will be a cooperative federal/state enterprise in which the states will have quite extensive abilities to fashion variations of the basic plan to meet their particular needs;• Primary care will be encouraged and incentives for physicians to train in primary care specialties provided;• Non-physician providers will be central to the functioning of the health care plans;• Efforts will be made to develop a "person power" pool so that people with an abstract "right" to health care will have real access to providers, in their localities, who can fulfill the promise that the right creates; [End Page 421]• The goal of cost containment will be central to the organization and regulation of the system;• Administrative simplicity and quality protections will be central.Co-chairing the Bioethics Working Group (BWG) of the White House Task Force on Health Care Reform was a unique experience. Approximately 40 Task Force working groups were established by Hillary Rodham Clinton, the President, and the senior Task Force staff. Various members of the President's office and other knowledgeable members of the Executive Branch selected the participants. In our group, appointments were made largely on the recommendations of the co-chairs. The BWG, among the last of the groups formed, carried the official name "The Working Group on the Ethical Foundations of the New System" and was jointly led by me and Marion Gray Secundy, a Professor of Bioethics at Howard University. The fact that the leadership of the Task Force saw fit to establish such a group, thereby confirming that bioethics is a player in the arena of health care policy, was in itself significant and was made no less so by the lack of clarity regarding the group's aims and goals.The working groups of the Task Force were organized into clusters, determined by the relatedness of the somewhat distinct, but always overlapping, content of their investigations. Separate clusters and working groups, for example, looked at mental health, long term care, and the benefit package and coverage for low-income and non-working families. On this last issue there was also a working group that explored health policy initiatives for underserved populations. This multiple focus on related issues proved to be an excellent method for ensuring that the complexity of these topics was sufficiently explored. There was a published schedule for when these groups met together, and members of other groups who had similar or overlapping concerns were invited to attend and to participate.Every week or so, all of the working groups reported to the Task Force leadership, under the direction of Ira Magaziner, in a process called a "tollgate." Prior to the tollgate, the working groups were required to submit formal written analyses of the problems they had most recently been considering. Copies of these documents were placed in a special room so that those who were interested could review... (shrink)