This article describes a case study in which community consultation was used to assist in the preparation of a research project on viewing self in the mirror after mastectomy. Breast cancer survivors, nurses, and other health care professionals were consulted using a variety of interactive modalities. Over a period of three months, pre-research planning information was obtained from participants. A descriptive qualitative design was used to analyze the data. The ethical goals of community consultation provided the (...) framework for dialogue and the synthesis of information. During this project, the potential benefits of the proposed research study were explored. Possible risks to future participants were discussed, and recommendations for participant protection suggested. Community members provided insight into the legitimacy of the study. Community consultation is a tool that researchers may consider when designing studies. (shrink)

When new laws are being considered to regulate emerging technologies, it is common to engage in a formal consultation process to assess community views, especially in sensitive areas where views may differ widely. However, it is not clear how we should assess the responses to such consultation. If the respondents with the most extreme views, at either end of the political or ethical spectrum, speak in large numbers or strong language, their submissions surely cannot be added up (...) and given the weight of the majority in determining the course of future action. The ‘silent majority’ of the community may not participate in the consultation process at all. Even if they do participate more fully, it will often not be possible to find a compromise solution that offers something to everyone.Professor Charlesworth considered these issues in his ground-breaking book, Bioethics in a Liberal Society. He said that there are some issues on which community consensus on a core set of values will not be possible. To move forward, a liberal society must accept that there will be a range of views but however discordant those views appear to be, it may still be possible to identify matters on which there is agreement. Those matters may then form the basis of a policy that is widely accepted, even if it is not what the individual participants would have chosen initially. This approach may be illustrated by examining recent community consultation in Australia concerning research involving human embryos. (shrink)

Community consultation is increasingly recommended, and in some cases, required by ethical review boards for research that involves higher levels of ethical risk such as international research and research with vulnerable populations. In designing a randomised control trial of a mental health intervention using a wait list control, we consulted the community where the research would be undertaken prior to finalising the study protocol. The study sites were two conflict-affected locations: Grozny in the Chechen Republic and Kitchanga (...) in eastern Democratic Republic of Congo. (shrink)

Exception from Informed Consent (EFIC) regulations detail specific circumstances in which Institutional Review Boards (IRB) can approve studies where obtaining informed consent is not possible prior to subject enrollment.To better understand how IRB members evaluate community consultation (CC) and public disclosure (PD) processes and results, semi-structured interviews of EFIC-experienced IRB members were conducted and analyzed using thematic analysis.Interviews with 11 IRB members revealed similar approaches to reviewing EFIC studies. Most use summaries of CC activities to determine community (...) members’ attitudes; none reported using specific criteria nor recalled any CC reviews that resulted in modifications to or denials of EFIC studies. Most interviewees thought metrics based on Community VOICES’s domains (feasibility, participant selection, quality of communication, community perceptions, investigator/IRB perceptions) would be helpful.IRB members had similar experiences and concerns about reviewing EFIC studies. Development of metrics to assess CC processes may be useful to IRBs reviewing EFIC studies. (shrink)

Major changes in the technological, societal, political, and economic environment have forced organizations across Europe to reshape and expand their strategic communication activities. However, knowledge of the future viability of public relations, employee and consumer communication, public affairs, or investor relations is often scarce. This has led to an increased demand for external consulting in the field. The quality of such intangible services is difficult to assess; this is a challenge for clients and consultants alike, and often results in conflict. (...) Communication research has rarely addressed this topic to date. This article expands the body of knowledge by introducing the key concepts, exploring drivers for quality assurance, and identifying sources of conflict in an empirical study of 1,558 communication practitioners in 43 European countries. The findings provide insights into current practices, indicate ways to secure quality and avoid conflict, and suggest directions for future research in an area of growing importance. (shrink)

Issues related to controlled human infection studies using Schistosoma mansoni (CHI-S) were explored to ensure the ethical and voluntary participation of potential CHI-S volunteers in an endemic setting in Uganda. We invited volunteers from a fishing community and a tertiary education community to guide the development of informed consent procedures. Consultative group discussions were held to modify educational materials on schistosomiasis, vaccines and the CHI-S model and similar discussions were held with a test group. With both groups, a (...) mock consent process was conducted. Fourteen in-depth key informant interviews and three group discussions were held to explore perceptions towards participating in a CHI-S. Most of the participants had not heard of the CHI-S. Willingness to take part depended on understanding the study procedures and the consenting process. Close social networks were key in deciding to take part. The worry of adverse effects was cited as a possible hindrance to taking part. Volunteer time compensation was unclear for a CHI-S. Potential volunteers in these communities are willing to take part in a CHI-S. Community engagement is needed to build trust and time must be taken to share study procedures and ensure understanding of key messages. (shrink)

International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research (...) practice locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status. (shrink)

Over the past few decades, Indigenous communities have successfully campaigned for greater inclusion in decision-making processes that directly affect their lands and livelihoods. As a result, two important participatory rights for Indigenous peoples have now been widely recognized: the right to consultation and the right to free, prior and informed consent (FPIC). Although these participatory rights are meant to empower the speech of these communities—to give them a proper say in the decisions that most affect them—we argue that the (...) way these rights have been implemented and interpreted sometimes has the opposite effect, of denying them a say or ‘silencing’ them. In support of this conclusion we draw on feminist speech act theory to identify practices of locutionary, illocutionary, and perlocutionary group silencing that arise in the context of consultation with Indigenous communities. (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)

Telepsychiatry has long been discussed as a supplement to or substitute for face-to-face therapeutic consultations. The current pandemic crisis has fueled the development in an unprecedented way. More and more psychiatric consultations are now carried out online as video-based consultations. Treatment results appear to be comparable with those of face-to-face care in terms of clinical outcome, acceptance, adherence and patient satisfaction. However, evidence on videoconferencing in a variety of different fields indicates that there are extensive changes in the communication behaviour (...) in online conversations. We hypothesise that this might impact ethically relevant aspects of the therapeutic relationship, which plays a prominent role in psychiatry. In this paper, we review effects of video-based consultations on communication between therapists and patients in psychiatry. Based on a common understanding of video-based consultations as changing the lived experience of communication, we categorise these effects according to sensory, spatial and technical aspects. Departing from a power-based model of therapeutic relationships, we then discuss the ethical significance of this changed communication situation, based on dimensions of respect for autonomy, lucidity, fidelity, justice and humanity. We conclude that there is evidence for ethically relevant changes of the therapeutic relationship in video-based telepsychiatric consultations. These changes need to be more carefully considered in psychiatric practice and future studies. (shrink)

Clinical ethics consultants (CECs) often face some of the most difficult communication and interpersonal challenges that occur in hospitals, involving stressed stakeholders who express, with strong emotions, their preferences and concerns in situations of personal crisis and loss. In this article we will give examples of how much of the important work that ethics consultants perform in addressing clinical ethics conflicts is incompletely conceived and explained in the American Society of Bioethics and Humanities Core Competencies for Healthcare Ethics Consultation (...) and the clinical ethics literature. The work to which we refer is best conceptualized as a specialized type of interviewing, in which the emotional barriers of patients and their families or surrogates can be identified and addressed in light of relevant ethical obligations and values within the context of ethics facilitation. (shrink)

Introduction: Uncertainty is omnipresent in cancer care, including the ambiguity of diagnostic tests, efficacy and side effects of treatments, and/or patients' long-term prognosis. During second opinion consultations, uncertainty may be particularly tangible: doubts and uncertainty may drive patients to seek more information and request a second opinion, whereas the second opinion in turn may also affect patients' level of uncertainty. Providers are tasked to clearly discuss all of these uncertainties with patients who may feel overwhelmed by it. The aim of (...) this study was to explore how oncologists communicate about uncertainty during second opinion consultations in medical oncology.Methods: We performed a secondary qualitative analysis of audio-recorded consultations collected in a prospective study among cancer patients who sought a second opinion in medical oncology. We purposively selected 12 audio-recorded second opinion consultations. Any communication about uncertainty by the oncologist was double coded by two researchers and an inductive analytic approach was chosen to allow for novel insights to arise.Results: Seven approaches in which oncologists conveyed or addressed uncertainty were identified: specifying the degree of uncertainty, explaining reasons of uncertainty, providing personalized estimates of uncertainty to patients, downplaying or magnifying uncertainty, reducing or counterbalancing uncertainty, and providing support to facilitate patients in coping with uncertainty. Moreover, oncologists varied in their choice of words/language to convey uncertainty.Discussion: This study identified various approaches of how oncologists communicated uncertain issues during second opinion consultations. These different approaches could affect patients' perception of uncertainty, emotions provoked by it, and possibly even patients' behavior. For example, by minimizing uncertainty, oncologists may consciously steer patients toward specific medical decisions). Future research is needed to examine how these different ways of communicating about uncertainty affect patients. This could also facilitate a discussion about the desirability of certain communication strategies. Eventually, practical and evidence-based guidance needs to be developed for clinicians to optimally inform patients about uncertain issues and support patients in dealing with these. (shrink)

An evaluation of mental capacity is critical to a clinician's judgment about whether or not persons can make medical treatment decisions on their own behalf, and uncertainty about their ability to meaningfully participate in that process is one of the more common reasons an ethics consult is requested. The care of decisionally incapable patients—particularly those who lack advance care documents and no living relative who can speak for them—presents a quandary to healthcare personnel attempting to plan care in their best (...) interest, especially when options are multiple but none are ideal. These situations can be further complicated if involving a patient with a dual diagnosis of mental retardation and mental illness living in a community group home. (shrink)

Background: Prior research has explored reasons why health care providers may or may not choose to seek an ethics consultation. Although low-quality communication is evident in many ethics consultations, it is unknown whether poor communication in clinical settings is related to health care providers' requests for ethics involvement. Objective: To assess the relationship between self-reported ratings of health care providers' inter- and intraprofessional communication and ethics consultation requests. Method: This cross-sectional survey was conducted using a self-administered questionnaire of (...) physicians and nurses in six intensive care units at one academic medical center in the United States. The questionnaire assessed perceptions about requesting ethics consultations and how health care providers perceive communication. Results: Two hundred sixty-two participants (228 nurses and 34 physicians) responded to the survey (response rate 55%; 59% for nurses and 41% for physicians). Requests for an ethics consult were positively associated with perceived quality of interprofessional communication (r =.13, p <.05), but perceptions of the number of ethical dilemmas that occur on participants' units each month were negatively associated with the perceived quality of intra-professional communication (r = −.17, p <.01). Conclusion: The relationship that was hypothesized between perceived poor communication and increased number of ethics consultations was not borne out by these data. Indeed, we found the opposite; these finding suggests that good inter- and intraprofessional communication may promote the use of outside resources, such as ethics, when they are needed. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:The Womanist-Buddhist Consultation as a Reading CommunityCarolyn M. Jones MedineIn Breaking the Fall, the late Robert Detweiler (1932-2008) imagines what a reading community, "a contemporary version of the old storytelling cultures,"1 might look like. He suggests that in such a community, "The accent on community itself would offer a balance to our excessively privatizing tendencies; the communal interaction could counter our relentless drive to interpret... (...) with attitudes of play and Gelassenheit (abandonment, chance, and relaxation); the writing and reading community especially as a liminal entity, could nurture a respect for the incomprehensibility of form and a reverence for mystery."2 This description offers an entry to the work of the Womanist-Buddhist Consultations. To reach a provisional understanding of the meaning of that work, I shall reflect on first what we mean when we say that we want to read something. Second, I turn to a conversation with Robert Detweiler, who was one of my mentors, as a way to address the form of reading that we do and the form of community that we make in the Womanist-Buddhist Consultations. Third, I want to draw on the thought of the consultations themselves, using Emmanuel Levinas's work on reading and ethics, to examine the capacity the consultations have to hold tensions creatively and to allow multiple meanings to be part of them. Finally, I want to address the goals for the consultations. I am thinking specifically of Melanie Harris's desire to see the consultations as generating practices that promote peace, compassion, and justice, and Charlie Hallisey's desire to generate a more complex reading of Buddhist texts in and of themselves.The Womanist-Buddhist Consultations have met three times between 2009 and 2011. We met at Harvard Divinity School and at Texas Christian University for sessions of four days each, and for an evening at the University of Georgia between the two longer meetings. The Texas Christian meeting included some previous members from the Harvard meeting, and added new ones. The University of Georgia meeting consisted primarily of students who participated in the reading practice.In the meeting at the University of Georgia, Charles Hallisey looked askance at me when I said that Buddhism offers an entry into peace and compassion; yet Melanie Harris, when she constructed the later session at Texas Christian University, deployed the terms "peace" and "justice" as descriptors for the work of the group. Hallisey's ironic glance occurred right before we read, at the University of Georgia, a text that contained magic and murder. His glance and the content of that text have prompted [End Page 47] me to think through Harris's claims and to see how our group achieves both a reading of Buddhism and an ethical practice that generates peace and points to justice.The instructions that Hallisey gives for the reading process describe a practice of "being and reading together" as we encounter a variety of Buddhist texts.3 The group's guide is the bodhisattva Manjushri, who has overseen our work through an image gracing the wall at all our meetings. Manjushri has a sword to cut through obstacles, and holds a book, signifying wisdom. The practice of reading with friends, Hallisey told us, comes from Jewish tradition: we need a friend to help us overcome what we can and to begin to see what we cannot. The work involves three steps:1. To read passages individually.2. To read the same passages together in small groups.3. To gather again as a large group and discuss what we have discovered.The major goal of reading is to encounter levels of ourselves to which we ordinarily have no access, by examining a text that becomes "generous" to us. Reading together, Hallisey asserts, makes the generosity of the text visible to us.This process of reading, I would argue, is different from what we usually do when we read and different from what we mean when we tell students to read. Patricia O'Connell Killen, an AAR Teaching Award winner, has delineated some of what we mean when we say to our students: "Read chapter 2 of 'X' and come to class prepared."4... (shrink)

Large-scale genetic databases are being developed in several countries around the world. However, these databases depend on public participation and acquiescence. In the past, information campaigns have been waged and little attention has been paid to dialogue. Nowadays, it is important to include the public in the development of scientific research and to encourage a free, open and useful dialogue among those involved. This paper is a review of community consultation strategies as part of four proposed large-scale genetic (...) databases in Iceland, Estonia, United Kingdom and Quebec. The Iceland Health Sector Database and Estonian Genome Project have followed a “communication approach” in order to address public concerns, whereas, UK Biobank and Quebec CARTaGENE have chosen a “partnership approach” to involve the public in decision-making processes. (shrink)

Drawing on Dutch mortgage orientation consultations, the present study uncovers how mortgage advisors communicate information packages to laypersons. These information packages are jointly constructed by advisors and customers as a distinct activity within a professional advisory setting. We name this activity ‘explicative telling’. Through a systematic analysis of 57 of such explicative tellings we will demonstrate that this explicative telling activity consists of doing preliminary work; a body in which general, official information about a specific mortgage topic is given and (...) information is applied to the customer’s situation; and closing sequences. Essential to the explicative telling activity is the recipient orientation of mortgage information, and also the advisors’ display of accountability for providing eligible information. This is supported by the irreversibility of the preliminary phase and by the presence of news deliverer upshot formulations during the body of the telling. (shrink)

Elizabeth Lanphier and Uchenna E. Anani provide a powerful argument for the value of a trauma-informed approach to the ethics consultation, which acknowledges the perspectives of all stakeho...

In “Deception and the Clinical Ethicist,” Christopher Meyers defends that view that deception practiced by clinical ethicists is legitimate if it satisfies a series of justifying conditions (Meyers...

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge (...) gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities. (shrink)

While there is no denying the relevance of ethical knowledge and analytical and cognitive skills in ethics consultation, such knowledge and skills can be overemphasized. They can be effectively put into practice only by an ethics consultant, who has a broad range of other skills, including interpretive and communicative capacities as well as the capacity effectively to address the psychosocial needs of patients, family members, and healthcare professionals in the context of an ethics consultation case. In this paper, (...) I discuss how emotion can play an important interpretive role in clinical ethics consultation and why attention to the role of defense mechanisms can be helpful. I concentrate on defense mechanisms, arguing first, that the presence of these mechanisms is understandable given the emotional stresses and communicative occlusions that occur between the families of patients and critical care professionals in the circumstances of critical care; second, that identifying these mechanisms is essential for interpreting and managing how these factors influence the way that the “facts” of the case are understood by family members; and, third, that effectively addressing these mechanisms is an important component for effectively doing ethics consultation. Recognizing defense mechanisms, understanding how and why they operate, and knowing how to deal with these defense mechanisms when they pose problems for communication or decision making are thus essential prerequisites for effective ethics consultation, especially in critical care. (shrink)

(2001). Whose History? Whose Future? Expanding the Exploration of Lived Experience in Ethics Consultation to Include Empirical Patient and Family and Community-Based Research. The American Journal of Bioethics: Vol. 1, No. 4, pp. 1-3.

In den westlichen Industrienationen gilt das Prinzip der informierten Einwilligung als das Zentralelement medizinischer Forschungsethik. In anderen, stärker die Relationalität als die Individualität von Personen betonenden Kulturen hingegen werden medizinische Entscheidungen traditionell eher durch die Gemeinschaft bzw. ihr Oberhaupt getroffen. Um verschiedenen kulturellen Normen gerecht zu werden, wird international tätigen Forschungsteams häufig empfohlen, den Community Consent und den Informed Consent einzuholen. Ausschlaggebend soll dabei letztlich der Informed Consent des Individuums sein. Es soll die Teilnahme auch dann verweigern können, wenn (...) die Gemeinschaft bzw. ihr Repräsentant dem Vorhaben zugestimmt hat. Der Beitrag diskutiert, ob eine solche Kopplung von Community Consent und Informed Consent tatsächlich geeignet ist, den Ansprüchen beider Prinzipien gerecht zu werden. Es wird argumentiert, dass die Kopplung von Community Consent und Informed Consent ethisch problematisch ist, wenn der Gemeinschaft hierbei ein Vetorecht eingeräumt wird, das geeignet ist, die Realisation konträrer individueller Interessen und damit das Selbstbestimmungsrecht der Betroffenen zu unterlaufen. Um zu gewährleisten, dass in interkulturellen Forschungszusammenhängen sowohl der individuellen als auch der relationalen Autonomie von Personen angemessener Raum gewährt wird, wäre es empfehlenswert, den Informed Consent ausdrücklich mit einer Community Consultation zu koppeln. Hier käme die Entscheidung gegen, aber auch für eine Studienteilnahme in letzter Instanz klar dem Individuum zu, während die Vorzüge einer Einbeziehung der Gemeinschaft in den Entscheidungsfindungsprozess anerkannt und genutzt werden könnten. (shrink)

Knowledge sharing is critical for consulting companies to develop sustainable competitive advantages. While the importance of KS in the information communication technology sector has been proved, the assumed linear relationships in KS mechanisms are confronted with KS dilemmas: consultants’ intention to maximize personal gains from KS resulting in restrained KS efforts, for fear of losing value after sharing knowledge with colleagues. Drawing on motivation theory and goal orientation perspective, this study examines the roles of learning goal orientation and incentive schemes (...) in KS among ICT consultants. The multiple regression analyses of 389 consultants’ responses from 14 Chinese and 8 Korean ICT consulting companies demonstrated an inverted U-shape relationship between LGO and knowledge sharing; incentive schemes moderate this relationship. The findings shed light on the knowledge-sharing dilemma, with theoretical implications to research regarding goal-orientation, knowledge sharing, and managerial practices about the motivation and incentives of ICT consultants. (shrink)

The existing EELS literature has usefully identified the scope of ethical issues posed by pharmacogenetic and pharmacogenomic research. The time has come for in-depth examination of particular ethical issues. The involvement of racial and ethnic communities in pharmacogenetic and pharmacogenomic research is contentious precisely because it touches upon the science and politics of studying racial and ethnic difference. To date, the ethics literature has not seriously taken account of the fact that such research impinges upon the interests of communities, and (...) that taking such interests seriously requires that we both protect and empower communities in research. We propose a framework that rests upon the recognition that communities are heterogeneous human associations and differing policies are appropriate for differing communities. Community consent and consultation and community consultation alone are neither appropriate nor required for all pharmacogenetic and pharmacogenomic research. Rather, application of these policy protections must take into account particulars of both planned research and the communities involved. (shrink)

Lei, a twenty‐seven‐year‐old Mandarin speaker, visits the United States seeking curative treatments for his acute myeloid leukemia. His mother, Hua, has traveled with him. Neither she nor Lei speak English, and the hospital does not have an onsite professional Mandarin‐speaking interpreter. Using a professional interpreter over the phone, Lei's oncologist, Dr. Branson, attempts to initiate a face‐to‐face goals‐of‐care conversation with Hua as the surrogate decision‐maker. Dr. Branson explains that Lei has “only weeks to months to live” and recommends initiating comfort‐care‐only (...) measures, but Hua says that she wants (and that Lei would want) continued aggressive measures. Hua says that her son might be a candidate for a phase I trial. Eventually, Dr. Branson brings in Dr. Chou, a Mandarin‐speaking resident to provide face‐to‐face interpretation. Hua insists that “there must be more standard therapies available” and says that she will wait until the trial begins. She begins crying, and the meeting disintegrates. Following this, Dr. Branson calls for an ethics consultation for “help in end‐of‐life communicating and reconciling discordance about prognostic information.”How should the ethicist use the institution's interpreter services? (shrink)

Simulations, in which healthcare professionals are observed in dialogue with role-played patients, are widely used for assessing professional skills. Medical education research suggests simulations should be as authentic as possible, but there remains a lack of linguistic research into how far such settings authentically reproduce talk. This article presents an analysis of a corpus of general practice simulations in the United Kingdom, comparing this to a dataset of real-life general practitioner consultations. Combining corpus linguistic and conversation analytic methodologies, key interactional (...) features of the simulations are identified, particularly those associated with successful/unsuccessful performance in terms of the examiner’s grading. The corpus analysis identifies various forms of the phrase ‘tell me more about’ to occur significantly more frequently in the simulations compared to real GP consultations, typically in the opening sequences and most frequently in successful cases. It falls to a conversation analysis of the data, examining this phrase within the interactional context of these opening sequences, to better understand the actions it performs. Successful candidates in the simulations are found to perform a consistent sequential pattern, often incorporating this phrase. Although simulated, these interactions have real professional consequences for those being assessed. Linguistic findings about what constitutes successful interaction or differences to real-life practice therefore have important implications for professional education and assessment. (shrink)

Systematic study of the intersection of ethics consultation services and solid organ transplants and recipients can identify and illustrate ethical issues that arise in the clinical care of these patients, including challenges beyond resource allocation. This was a single-centre, retrospective cohort study of all adult ethics consultations between January 1, 2007, and December 31, 2017, at a large academic medical centre in the north-eastern United States. Of the 880 ethics consultations, sixty (6.8 per cent ) involved solid organ transplant, (...) thirty-nine (65.0 per cent) for candidates and twenty-one (35.0 per cent ) for recipients. Ethics consultations were requested for 4.3 per cent of heart, 4.9 per cent of lung, 0.3 per cent of liver, and 0.3 per cent of kidney transplant recipients over the study period. Nurses were more likely to request ethics consultations for recipients than physicians (80.0 per cent vs 20.0 per cent, p = 0.006). The most common reason for consultation among transplant candidates was discussion about intensity of treatment or goals of care after the patient was not or was no longer a transplant candidate. The most common reason for ethics consultation among transplant recipients was disagreement between transplant providers and patients/families/non-transplant healthcare professionals over the appropriate intensity of treatment for recipients. Very few consultations involved questions about appropriate resource allocation. Ethics consultants involved in these cases most often navigated communication challenges between transplant and non-transplant healthcare professionals and patients and families. (shrink)

Ageing causes progressive decline in metabolic, behavioural, and physiological functions, leading to a reduced health span. The extracellular matrix (ECM) is the three‐dimensional network of macromolecules that provides our tissues with structure and biomechanical resilience. Imbalance between damage and repair/regeneration causes the ECM to undergo structural deterioration with age, contributing to age‐associated pathology. The ECM ‘Ageing Across the Life Course’ interdisciplinary research network (ECMage) was established to bring together researchers in the United Kingdom, and internationally, working on the emerging field (...) of ECM ageing. Here we report on a consultation at a joint meeting of ECMage and the Medical Research Council / Versus Arthritis Centre for Integrated Research into Musculoskeletal Ageing, held in January 2023, in which delegates analysed the key questions and research opportunities in the field of ECM ageing. We examine fundamental biological questions, enabling technologies, systems of study and emerging in vitro and in silico models, alongside consideration of the broader challenges facing the field. (shrink)