Engagement in health research is increasingly practised worldwide. Yet many questions remain under debate in the ethics field about its contribution to health research and these debates have largely not been informed by those who have been engaged in health research. This paper addresses the following key questions: what should the ethical goals of engagement in health research be and how should it be performed? Qualitative data were generated by interviewing 22 people with lived (...) experience, members of the public, and engagement managers about power sharing in health research. Thematic analysis of study data identified the following five themes: the value of engagement in research, ideal engagement, tokenistic engagement, terms to describe those engaged, and engagement roles in research. The paper presents that data and then considers what insights it offers for what engagement should look like—its ethical goals and approach—according to those being engaged. (shrink)

BackgroundEngagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on (...) this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly.MethodsAn exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia.ResultsThree main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees.ConclusionsBased on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings. (shrink)

Research represents an essential component of the response to infectious disease outbreaks and to other public health emergencies, whether they are localised, of international concern, or global. Research conducted in such contexts also comes with particular ethics challenges, the awareness of which has significantly grown following the Ebola outbreak in West Africa, the Zika outbreak in Latin America and the COVID-19 pandemic. These challenges include the need for implementing meaningful community engagement with the researched communities, not just (...) to build unidirectional trust towards the research team, but to achieve a genuine and mutually respectful partnership before, during and after the research. Here, we describe the real-life experience of 10 well-established research clinics in Nairobi, where a successful experience of community engagement linking prevention and care to research was interrupted during the COVID19 pandemic. We contrast this experience with the concept and processes of community engagement as described in selected scientific manuscripts and guidelines, to formulate some conclusions and recommendations. We contend that more action is needed, from research ethics committees and other key-research stakeholders, to align policies and practices with ethics guidance and with evidence-based recommendations from the academic literature, to achieve meaningful community engagement during emergency research, irrespective of the scale and location of an outbreak or public health crisis. Failure to do so, will aggravate the (postcolonial) asymmetries of power in global health and local systems. (shrink)

People with lived experience are individuals who have first-hand experience of the medical condition being considered. The value of including the viewpoints of people with lived experience in health policy, health care, and health care and systems research has been recognized at many levels, including by funding agencies. However, there is little guidance or established best practices on how to include non-academic reviewers in the grant review process. Here we describe our approach to the inclusion (...) of people with lived experience in every stage of the grant review process. After a budget was created for a specific call, a steering committee was created. This group included researchers, people with lived experience, and health systems administrators. This group developed and issued the call. After receiving proposals, stage one was scientific review by researchers. Grants were ranked by this score and a short list then reviewed by people with lived experience as stage two. Finally, for stage three, the Steering Committee convened and achieved consensus based on information drawn from stages one and two. Our approach to engage people with lived experience in the grant review process was positively reviewed by everyone involved, as it allowed for patient perspectives to be truly integrated. However, it does lengthen the review process. The proposed model offers further practical insight into including people with lived experience in the review process. (shrink)

In Brazil, the epicenter of the Zika crisis, brown, black, and indigenous poor women living in municipalities with scarce resources were disproportionally affected. The gendered consequences of the epidemic exposed how intersectional lenses are central to understand the impact of public health emergencies in the lives of women and girls. The demand for Zika-affected children and women to be research participants is relevant for an ethical analysis of participant protection procedures during a crisis. We investigated how women experienced research (...) participation by analyzing their narratives. Two-year-long longitudinal qualitative study in Brazilian sites located in the epidemic's epicenter was performed using mixed methods: ethnography with women from two distinct states and individual semi-structured interviews with five women in different Zika-affected states, four of which were community leaders. All women in the study were mothers or grandmothers of Zika-affected children. Thematic analysis was used for data evaluation. Women perceived being pressured to participate in research and a lack of benefit sharing. Structural determinants of gender inequality, such as its effect on power distribution, were found to impact research participant protection. Formal procedures for research protocols approvals were insufficient in protecting participants because these instruments were unable to account for structural aspects. Communitarian mobilization, through WhatsApp groups, was found to be an important mechanism to create conditions to challenge oppressive structures. Strengthening public health, effective community-based participation in research planning and implantation of ethical strategies that promotes gender equality can have transformative effect on unequal power structures and promote participant protection. (shrink)

Background Citizen science and models for public participation in health research share normative ideals of participation, inclusion, and public and patient engagement. Academic researchers collaborate in research with members of the public involved in an issue, maximizing all involved assets, competencies, and knowledge. In citizen science new ethical issues arise, such as who decides, who participates, who is excluded, what it means to share power equally, or whose knowledge counts. This article aims to present an ethics framework (...) that offers a lens of understanding and heuristic guidelines to deal with ethical issues in citizen science. -/- Methods We conducted seven case studies between 2015 and 2021 to attune and validate the ethics framework for the context of citizen science. The cases related to studies with older adults, people with a psychiatric vulnerability, people dependent on community care, people who are unemployed or living in poverty or both, and young adults with respiratory disease. -/- Results Ethics in citizen science reaches beyond the ethical issues in traditional biomedical and health research. It entails more than following procedures about informed consent and privacy and submitting a proposal to a Medical Research Ethics Committee. Ethics in citizen science relates to everyday ethical issues during the study, including relational and moral complexities concerning collaboration, sharing power, and democratic decision-making. Dealing with these issues requires ethics work of researchers. This entails seeing ethically salient issues and reflecting on everyday ethical issues. Ethics work consists of seven features: framing work, role work, emotion work, identity work, reason work, relationship work, and performance work. All are relevant for researchers in citizen science. -/- Conclusions Ethical issues in citizen science often relate to power differentials, partnership, and collaboration between academics and non-academics. The ethics framework prepares researchers for the work needed in citizen science to act responsibly and offers a heuristic guide to reflect on ethics. Reflection on ethics is a pathway towards ethical citizen science, especially if researchers collaboratively reflect in partnership with non-academics who are subject to the moral issue. (shrink)

ABSTRACTThere is a growing body of literature describing conceptual frameworks for working with participatory visual methods. Through a global health lens, this paper examines some key themes within these frameworks. We reflect on our experiences of working with with an array of PVM to engage community members in Vietnam, Kenya, the Philippines and South Africa in biomedical research and public health. The participants that we have engaged in these processes live in under-resourced areas with high prevalence of (...) communicable and non-communicable diseases. Our paper describes some of the challenges that we have encountered while using PVM to foster knowledge exchange, build relationships and facilitate change among individuals and families, community members, health workers, biomedical scientists and researchers. We consider multiple ethical situations that have arisen through our work and discuss the ways in which we have navigated and negotiated them. We offer our reflections and learning from facil... (shrink)

Introduction: Mental health nursing is dependent on nurses’ ability to engage in therapeutic relationships with patients. The ability to manage professional boundaries is equally important, but less explored. This study aims to address the following research questions: How do nurses define their professional, personal, and private roles? What are nurses’ experiences with professional boundaries? What are the implications of nurses’ understanding of these boundaries? Background: Nurse–patient relationships are characterized by asymmetrical power dynamics, which places the responsibility of delineating (...) professional boundaries on the nurse. While ethical codes offer guidance, nurses must identify appropriate boundaries in a dynamic process that relies on the clinical context. Research design: This study used critical discursive psychological analysis to examine data from participant observations, individual interviews, and focus group discussions. Participants and research context: We included 16 nurses working in mental health care in this study, comprising 12 in specialist mental health care and 4 in community mental health care. Ethical considerations: The study was registered with Norwegian Social Science Data Services. Results: Nurses defined professionalism as being an educated caregiver who prioritizes patients’ needs. Professionalism involves personal engagement, while some personal matters remain private. However, nurses experienced challenges in maintaining professional boundaries, facing dilemmas due to the subjective nature of boundaries and patients’ unpredictable responses. Conclusions: While nurses prioritize patients’ needs and best interests, this study demonstrated that personal engagement is considered part of professionalism. However, nurses encounter complex dilemmas in setting professional boundaries. Additionally, these boundaries can either emphasize or de-emphasize the power differential in nurse-patient relationships. (shrink)

In the past 50 years, an ethical-legal boundary has been drawn between treatment and research. It is based on the reasoning that the two activities pursue different purposes. Treatment is aimed at achieving optimal therapeutic benefits for the individual patient, whereas the goal of scientific research is to increase knowledge, in the public interest. From this viewpoint, the patient’s experience should be clearly distinguished from that of a participant in a clinical trial. On this premise, two parallel and (...) mutually exclusive regimes have been established. Yet in the case of deep brain stimulation (DBS), this presentation is a poor fit, for both the patient’s lived experience and medical practice and research. The frictions may be explained by the specificities of the treatment (including surgery and medical devices) and of the pathologies concerned (chronic and evolutive), and by the characteristics of the medical team implementing the treatment. These particularities challenge the dominant frame of reference in medical bioethics and cause difficulties for the current legal framework in fulfilling its dual role: to protect patients while supporting the development of innovative treatments. The dominant model is still the clinical trial for medication safety and legal requirements of drug market regulation. However, DBS forces us to reflect on a medical device that is permanently implanted in the brain by highly specialized multi-disciplinary neurosurgical teams, for the treatment of chronic evolutive diseases. These devices demand fine-tuning on a case-by-case basis and there is still a lot to discover about why DBS is effective (or not). As a result, the wall between treatment and research is osmotic: many discoveries are made incidentally, in the course of treatment. The following study begins with these observations, and suggests that we review legal provisions (especially in French and United States law) so that they are better adapted to the first-person needs and experience of the patient undergoing brain stimulation. (shrink)

BackgroundCommunities’ engagement in priority-setting is a key means for setting research topics and questions of relevance and benefit to them. However, without attention to dynamics of power and diversity, their engagement can be tokenistic. So far, there remains limited ethical guidance on how to share power with communities, particularly those considered disadvantaged and marginalised, in global health research priority-setting. This paper generates a comprehensive, empirically-based “ethical toolkit” to provide such guidance, further strengthening a previously proposed checklist version of the (...) toolkit. The toolkit places community engagement and power-sharing at the heart of priority-setting for global health research projects.MethodsA two part method was used to generate a revised toolkit. Part one was conceptual, consisting of novel analysis of empirical data (previously collected as part of the same overall project) to identify additional concepts relevant to power-sharing between researchers and communities in global health research priority-setting. Part two was empirical, seeking feedback on the initial checklist version of the toolkit in interviews with researchers, ethicists, community engagement practitioners, and community organisation staff.ResultsThe conceptual process identified two additional components of engagement and six additional features that affect who defines, who participates, and who is heard in research priority-setting. New ethical considerations related to sharing power in global health research priority-setting are articulated in relation to those components and features. Interviewees provided suggestions for revising the toolkit’s content and language. The implications of these suggestions and the analytic process for the toolkit are described.ConclusionsThe resultant toolkit is a reflective project planning aid for researchers and their community partners to employ before priority-setting is undertaken for global health research projects. It consists of three worksheets (to be completed collectively) and a companion document detailing how to use them. It is more comprehensive than the initial toolkit, as worksheet questions for discussion cover all phases of priority-setting. (shrink)

BackgroundThere have been notable investments in large multi-partner research programmes across the agriculture-nutrition-health (ANH) nexus. These studies often involve human participants and commonly require research ethics review. These ANH studies are complex and can raise ethical issues that need pre-field work, ethical oversight and also need an embedded process that can identify, characterise and manage ethical issues as the research work develops, as such more embedded and dynamic ethics processes are needed. This work builds on notions of (...) ‘ethics in practice’ by developing an approach to facilitate ethical reflection within large research programmes. This study explores the application of a novel ‘real-time research ethics approach’ (RTREA) and how this can support ethical mindfulness. This involves embedding ethical analysis and decision-making within research implementation, with a continuous dialogue between participants and researchers. The aim is to improve ethical responsiveness and participant experience, which in turn may ethically support adherence and retention. In this case study, a bioethics team (BT) was embedded in a community-based randomised, controlled trial conducted in rural Malawi, titled the ‘Addressing Hidden Hunger with Agronomy’. To identify ethical issues, the researchers conducted ten focus group discussions, fourteen in-depth interviews with key informants, two workshops, observed two sensitisation and three activity meetings conducted by the trial team, and analysed fifteen reports from pre-trial to trial implementation.ResultsThe RTREA facilitated the identification of social and ethical concerns and made researchers aware of participants’ ‘lived research experience’. To address concerns and experiences, the BT worked with researchers to facilitate conversation spaces where social and ethical issues were discussed. Conversation spaces were designed to create partnerships and promote participatory methods to capture trial participants’ (TPs) perspectives and experiences.ConclusionsThe use of RTREA showed the value of real-time and continuous engagement between TPs and researchers. These real-time processes could be embedded to complement traditional ethical guidance and expert opinions. A deeper engagement appeared to support greater operationalising of principles of inclusion, empowerment, and participant autonomy and supported researchers ‘ethical mindfulness’ which in turn may support instrumental outcomes of high recruitment, retention, and adherence levels. (shrink)

Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the (...) role of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters’ (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations. (shrink)

Context: Participatory arts-based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. Objective: Using the current literature on arts-based health research as a foundation, (...) this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. Results: We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in-practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. Conclusion: Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. Patient or Public Contribution: The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages. (shrink)

Community engagement is gaining prominence in global health research. So far, a philosophical rationale for why researchers should perform community engagement during such research has not been provided by ethics scholars. Its absence means that conducting community engagement is still often viewed as no more than a ‘good idea’ or ‘good practice’ rather than ethically required. In this article, we argue that shared health governance can establish grounds for requiring the engagement of low‐ and (...) middle‐income country (LMIC) community members in global health research, where such research aims to help reduce health disparities. This philosophical basis has important implications for the ethical goals ascribed to engagement and the approach adopted to undertake it. We suggest the ethical goals of engagement in equity‐oriented global health research should include: (a) generating research topics and questions that reflect the key problems disadvantaged groups face in accessing healthcare, services and broader social determinants of health and (b) promoting the translation of research findings into policy and practice in ways that benefit the health of disadvantaged groups. We propose engagement practice should have the following features: deliberation with LMIC community members to make a range of project decisions, beginning with setting research topics and questions; inclusion of members of disadvantaged groups and those with the power to change policy and practice to benefit them; and purposeful structuring of deliberations to minimize the impact of power disparities between LMIC community members. Finally, we reflect on how these features differ from those typical of much current community engagement practice in LMICs. (shrink)

Nursing has a unique opportunity to address issues of structural violence that contribute to poor health outcomes. Models for designing nursing care relative to the social determinants of health can be adapted from the discipline of peace studies and the phenomenon of peacebuilding. The aim of this qualitative study was to describe the lived experience of peacebuilding from the perspective of community or public health nurses. Interviews were conducted with eight participants. Attributes of the peacebuilder (...) included fostering human relationships that value the inherent worth and dignity of others, nurturing a character of humility and moral courage, and contemplating the personal cost of engaging in prolonged processes of peacebuilding. Practices of peacebuilding included mediating conflict through multilayered processes, accompanying others to places of empowerment, and utilizing interdisciplinary teaching and learning to build capacity for change. Increasing an understanding of the lived experience of peacebuilding by nurses is relevant to nursing research, theory, and practice, and adds to a broader understanding of peacebuilding. (shrink)

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories (...) of ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement. Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices. (shrink)

This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged (...) research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics CommentaryMichael Robertson, Senior Research FellowThe French philosopher Michel Foucault once recounted the story of the English King, George III, being restrained by his guards at the direction of his physician Dr. Willis. King George, presumably deranged by a psychotic mania consequent upon porphyria, was incapable of self-rule and his power was usurped by the medical profession in an act of coercion tantamount to treason. This for Foucault (...) was a profound metaphor of psychiatric power.1The plight of Mdm. W yokes the two most emotive issues in psychiatry — involuntary treatment and the administration of ECT. Whilst only utilised at an extremity of clinical practice, both of these are the most misunderstood of actions performed by the psychiatric profession. Yet, in many circumstances, they are life-saving.In essence, we are confronted with a profoundly depressed woman, whose illness is seemingly resistant to first line treatment and poses a serious, credible risk of harm. Most psychiatrists would regard this as somewhat of a psychiatric emergency. We are informed that Mdm. W’s family has transcended any cultural taboos about mental illness and is engaged in her care, has an extensive lived experience of her severe mood disorder and accepts, indeed welcomes, the use of ECT to terminate a severe episode of depression. In the course of a psychotic depression, Mdm. W is suffering profound distress and presents a risk of either suicide or serious medical complications if the episode persists. Despite the minimal discomfort during the actual administration of ECT, Mdm. W’s distress will be compounded by the further restraint needed to prevent from her eating and drinking prior to anaesthesia.It is difficult to know what Mdm. W’s experience of this situation would [End Page 230] be. Through the prism of her disturbed mental state, with its derangements in thinking, cognitive functioning and apprehension of reality, she would likely experience the situation as one of fear or terror; she would likely interpret ECT and the enforced restriction of oral intake prior to the procedure as punitive — further evidence of her “sins”, reinforcing her delusional guilt and nihilism. Yet to speak to Mdm. W in circumstances of euthymia or normal mood, where such derangements no longer occur, might reveal an utterly different perspective on the situation. Like many people with episodic mental illnesses, Mdm. W might, when such a scenario was put to her, consent to future treatment with ECT without equivocation. Indeed, many patients with bipolar disorder formulate advance directives in regard to the specific management of their possible future episodes of illness.If the clinical and legal aspects of this situation are so clear, why is there a sense of a dilemma in the realm of clinical ethics? Beyond the emotive nature of the situation, we see a deeply distressed woman being provided potentially life-saving treatment, which is being denied to her by the profound impairments of insight and judgement consequent upon her illness.In Singapore, such detention and enforced treatment under the Mental Capacity Act (2010) applies to a person with a mental illness or disorder who lacks capacity to make decisions in their own best interests based upon impairment of mind or brain. This would be considered a “capacity” based mental health law. In other jurisdictions, the legal test and evidentiary justification for such care may be predicated upon risk of harm to self or others. In either setting, Mdm. W’s clinical situation provides adequate legal justification for such enforced care.The moral justification of such laws falls into two general categories — the “risk” argument and the “capacity” argument. In mental health legislation, the “harm principle”, as first elaborated in John Stuart Mill’s On Liberty,2 is usually defined in terms of the construct of “risk”. Risk is a term that has multiple meanings in different disciplinary contexts, although all approaches to “risk” attempt to apply knowledge to an area of uncertainty.3 The notion of “risk assessment” is usually considered as the process of categorising individuals by their perceived likelihood of causing serious harm to themselves or harm to others. In the insurance industry, actuarial assessment is a mathematical discipline aimed at computing a probability of adversity... (shrink)

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical (...) principles are differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field. (shrink)

Engaging communities in community-based health research is increasingly being adopted in low- and middle-income countries. The use of community advisory boards is one method of practicing community involvement in health research. To date, few studies provide in-depth accounts of the strategies that CAB members use to practice community engagement. We assessed the perspectives, experiences and practices of the first local CAB in Eswatini, which was implemented as part of the MaxART Early Access to ART (...) for All study. Trained Swazi research assistants conducted two focus group discussions and 13 semi-structured interviews with CAB members who had been part of the MaxART study for at least 2.5 years. Interviews explored CAB composition and recruitment, the activities of CAB members, the mechanisms used to engage with communities and the challenges they faced in their role. The MaxART CAB played an active role in the implementation of the Early Access to Art for All study, and activities mainly focused on: promoting ethical conduct, in particular privacy, consent and confidentiality; communication and education, communicating about the study and educating the community on the benefits of HIV testing and early access to HIV treatment; and liaising between the community and the research team. Strategies for interacting with communities were varied and included attending general community meetings, visiting health facilities and visiting public places such as cattle dipping tanks, buses, bars and churches. Differences in the approach to community engagement between CAB members living in the study areas and those residing outside were identified. The experiences of the first CAB in Eswatini demonstrate that community engagement using CABs is a valuable mechanism for engaging communities in implementation studies. Considerations that could impact CAB functioning include clearly defining the scope of the CAB, addressing issues of CAB independence, the CAB budget, providing emotional support for CAB members, and providing continuous training and capacity building. These issues should be addressed during the early stages of CAB formation in order to optimize functioning. (shrink)

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical (...) principles are differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field. (shrink)

Ravelingien et al1 argue that we should recategorise people in a permanent vegetative state as dead. Although the dilemma they describe is very real, their solution will not work. Other respondents to this paper have advanced several powerful arguments against the attempt to describe patients in a PVS as dead. Fortunately, the original argument contains sufficient resources for developing an alternative solution to this dilemma without having to radically change the current legal or social status of patients in a PVS. (...) In fact, patients in a PVS may be enrolled in xenotransplantation experiments, provided that their prior informed consent has been sought.The motivation for the original paper was to resolve an apparently intractable ethical conflict. On the one hand, there are powerful ethical and medical reasons for proceeding with research into the transplantation of non-human organs into human patients, whereas on the other, there are equally powerful ethical reasons for blocking whole-organ transplant experiments. These reasons are unusual in that special problems with xenotransplantation will block experiments that are permitted in other cases. In particular, the unquantifiable risk of a pandemic triggered by diseases such as porcine endogenous retrovirus crossing the species barrier will either block the research or expose subjects to the risk of indefinite quarantine . The authors also argue that the restrictions placed on transplant recipients and the possibility of long-term and intrusive monitoring, restrictions on sexual contacts and reproduction, and possible confinement represent excessive and ethically unjustifiable burdens. Over time, the recipients may wish to withdraw their consent, but the risks to public health would prevent them from doing so, thereby violating the basic principle that subjects of scientific and medical experiments should be able to revise or withdraw consent . …. (shrink)

This book exploits the power of phenomenological methods to access and describe lived moral experiences of pain and suffering for patients, their families and the wider community. Creating new fields of communication for patients, their family members and health professionals in shared decision making processes, this book builds on knowledge about suffering to help and guide correct action in preventing and relieving chronic pain and improving systems of care. It offers a new phenomenology for understanding moral experience (...) in serious illness and suffering, and its implication for policy, practice and research. A series of applied chapters, looking at individual experiences of suffering and care experiences, present some areas of ethical inquiry, including: pain and suffering maternal care ethics evaluation and moral deliberation about treatment options decision-making and moral agency end-of-life experiences of care. Exploring how moral phenomenology could provide fruitful alternatives to traditional frameworks in bioethics, this is an important addition to the literature. It will be of interest to scholars and students of bioethics and phenomenological methods in the health and human services. (shrink)

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)

Background Community involvement in research has been advocated by researchers, communities, regulatory agencies, and funders with the aim of reinforcing subjects’ protection and improving research efficiency. Community involvement also has the potential to improve dissemination, uptake, and implementation of research findings. The fields of community based participatory research conducted with indigenous populations and of participatory action research offer a large base of experience in community involvement in research. Rules on involving the population affected when conducting research (...) have been established in these fields. But what is the role of community engagement in clinical research and observational studies conducted in biomedical research outside of these specific areas? Main body of the abstract More than 20 years ago, in the field of HIV medicine, regulatory bodies and funding agencies recommended the constitution of a formal organism, the Community Advisory Board, as part of the study requirements for HIV trials. More recently, CABs have been adopted and used in other fields of medical research, such as malaria. CABs are not without limitations, however, and there is little research on the effectiveness of their use in achieving community protection and participation. Nevertheless, CABs could be a model to import into clinical trials and observational research where no alternative model of community representation is currently being used. Conclusions Allocating more resources to training and shifting more power to community representatives could be part of the solution to current CAB limitations. However, for researchers to be able to apply these recommendations on community involvement, certain conditions need to be met. In particular, funding agencies need to recognize the human and financial resources required for serious community involvement, and the academic environment needs to take community involvement into account when appraising, mentoring, and training researchers. (shrink)

Urban communities experiencing marginalization often disproportionately bear the risks and burdens of research and are left out of research ethics governance processes. To address this, many communities have created place-based and community-led research ethics governance initiatives to ensure that community voice is included in discussions surrounding research conduct. Place-based strategies in the Vancouver Downtown Eastside, the Bronx, and the Philadelphia Promise Zone successfully mobilize community perspectives in research ethics, filling in a significant gap in (...) our current system of institutional research ethics review and oversight. These cases demonstrate that place-based research ethics governance has the potential to account for the community-level risks posed by research projects and to ensure communities receive more felt benefits. Place-based communities sidestep simplistic notions of identity based on single shared features and make space for intersectional analyses and diverse community viewpoints to be considered. Such communities have a unique claim to expertise given their shared experience of place, which grants them the ability to see problematic assumptions embedded in scientific projects as well as community-level concerns within research. Despite this, many marginalized communities are excluded from current research ethics oversight processes. This exclusion demands critical examination and a way forward to facilitate the integration of place-based community oversight strategies within research ethics governance. (shrink)

This paper focuses on some of the ethical issues which may arise when conducting research in the context of homelessness. These issues are considered from the viewpoints of researchers, research coordinators and interviewers, drawing from their extensive real world experience. In addition to negotiating the complex context of homelessness, community-based homelessness researchers need to address a number of ethical issues in research conception, design, implementation and dissemination. Although these issues are commonly considered in community-engaged research, research with people (...) who are homeless may raise exceptional challenges. Such challenges include determining the nature of informed consent; protecting research participants and researchers, and determining appropriate compensation for participation. Understanding the context of homelessness to conduct ethical research will require sharing information and joint decision-making, processes that must include members of communities within which the research participants live. Furthermore, researchers should be sensitive to the changing context of homelessness, and vigilant for new ethical challenges. (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.

Increasing attention and efforts are being put towards engaging patients in health research, and some have even argued that patient engagement in research is an ethical imperative. Yet there is relatively little empirical data on ethical issues associated with PER. A three-round Delphi survey was conducted with a panel of early-career researchers involved in PER. One of the objectives was to examine the ethical dimensions of PER as well as ECRs’ self-perceived level of preparedness to conduct PER ethically. (...) The study was conducted among awardees of the Québec SPOR-SUPPORT Unit in Canada, who represent the next generation of researchers involved in PER. Many themes were addressed throughout the study, such as definition, values, patients’ roles, expected characteristics of patients, and anticipated challenges. Open-ended questions were used, and all quantitative data were collected through statements using 7-point Likert scales. Between April and November 2016, 25 ECRs were invited to participate; 18 completed both the first and second rounds, and 16 completed the third round. Panelists consisted of nine women and seven men with various backgrounds. The majority were between 25 and 44 years old. Panelists’ responses showed PER raises important ethical issues: 1) professionalization of patients involved in research ; 2) adequate remuneration of patients; 3) fair recognition of patients’ experiential knowledge; and 4) tokenism. While the panelists felt moderately prepared to confront these ethical issues, they reported being uncomfortable applying for an ethics certificate for a PER project. If PER is an ethical imperative, it is vital to establish clear ethical standards and to train and support the PER community to identify and resolve ethical issues. Despite their overall readiness to conduct PER, panelists did not feel adequately prepared to address many of these issues. It is not easy for ECRs to reconcile ethical desiderata and logistical imperatives. Additional research should focus on supporting the responsible conduct of PER, which, if not done, can undermine the credibility and feasibility of the entire PER enterprise. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Women, Ethics, and Inequality in US Healthcare: “To Count among the Living” by Aana Marie Vigen, and: New Feminist Christianity: Many Voices, Many Views ed. by Mary E. Hunt and Diann L. NeuKelly Denton-BorhaugWomen, Ethics, and Inequality in US Healthcare: “To Count among the Living” By Aana Marie Vigen NEW YORK: PALGRAVE MACMILLAN, 2011. 304 PP. $31.11New Feminist Christianity: Many Voices, Many Views Edited by Mary (...) E. Hunt and Diann L. Neu WOODSTOCK, VT: SKYLIGHT PATHS, 2010. 384 PP. $24.99In this age of the Supreme Court Hobby Lobby decision, which declared that corporation owners’ religious commitments could provide a basis for denial of their employees’ critical reproductive health insurance benefits (with particular impact on the lives of women), ethical investigation of medical sociology, theology, and the realities of women’s lives is more important than ever. Originally released in 2006, Aana Marie Vigen’s Women, Ethics, and Inequality in US Healthcare makes important headway through these complex waters. And for this volume in the Palgrave Macmillan Series on Black Religion / Womanist Thought / Social Justice, editors Dwight N. Hopkins [End Page 202] and Linda E. Thomas set forth the goal to “pioneer conceptual work and boundary-pushing effort engaging Black Religion or Womanist thought, and social justice” (xiv).Rereleased in paperback in 2011 with a new preface, Vigen’s updated health statistics reveal how racial-ethnic minorities “continue to be overrepresented among the ranks of the uninsured and/or of those living in poverty” (xliii). Her project is to better understand what enables and perpetuates this inequitable distribution and oppression, and to suggest methods of redress and reform. But in order to accomplish any of this, society in general and especially those with socioeconomic power—including administrative leaders in health care, medical providers, and ethicists—need to listen much more deeply to the stories of those who are most vulnerable and are being most negatively affected by current health care systems and practices. For Vigen, this meant a decision to focus on in-depth interviews with eight black and Latina women with breast cancer, in addition to six health care providers.With this method, Vigen pursues a very ambitious goal to, as she puts it, “begin a conversation among several distinct dialogue partners: medical sociology, biomedical ethics, ethnography, theology, and feminist social ethics” (5). She uses a “reflexive” practice, striving for openness to the new insights and ideas that emerged from this creative, multidisciplinary encounter. However, even before launching her interviews, her analysis of the process to seek approval from the Institutional Research Board illustrates the “clash of cultures” she would encounter, as she writes, “one cannot take for granted that others will share the view that women of color are able to speak truth in their own right and out of their own experiences—without comparison to others—about human personhood, dignity, and adequate healthcare quality” (107). It is to Vigen’s credit that she remained undeterred; if anything, the struggle she encountered with powerful leaders helped to confirm and focus the value of this work: not to tell every story, “but to tell a few with care and attention to detail” (108).Vigen’s ethnographical method makes it possible for her to illuminate and address not only stark inequities but also much subtler dynamics of racism combined with socioeconomic discrimination. Along the way, she illustrates a wide variety of experiences of oppression. In contrast to the experience of white patients, these female patients of color tended to be sent to the accounting/financing office before being allowed to see the doctor (144). Though white patients may express strong emotions in medical settings, some women of color felt pressured to reassure white doctors that they could be rational and not overly emotional (141). Socioeconomic and racial discrimination often reinforced one another in these settings. Perhaps most alarming, Vigen notes, the white care providers she interviewed seemed to be very unconscious of [End Page 203] their own racial identity and its role in medical care encounters (165). Her final chapter concludes with a series of immensely practical ethical mandates that would help alter these oppressive patterns. Clergy, students of ethics, and anyone... (shrink)

Rural, remote, and northern Indigenous communities in Canada frequently face limited access to healthcare services with ongoing physician and staff shortages, inadequate infrastructure, and resource challenges. These healthcare gaps have produced significantly poorer health outcomes for people living in remote communities than those living in southern and urban regions who have timely access to care. Telehealth has played a critical role in bridging long-standing gaps in accessing healthcare services by connecting patients and providers across distance. While the adoption of (...) telehealth in Northern Saskatchewan is growing, its initial implementation faced several barriers related to limited and stretched human and financial resources, infrastructure challenges such as unreliable broadband, and a lack of community involvement and engaged decision-making. Emerging ethical issues during the initial implementation of telehealth in community contexts have been wide ranging including concerns around privacy that have also shaped patients’ experiences and particularly the need to consider place and space within rural contexts. Drawing from a qualitative study with four Northern Saskatchewan communities, this paper offers critical perspectives on the resource challenges and place-based considerations that are shaping telehealth in the Saskatchewan context and provides recommendations and lessons learned that could inform other Canadian regions and countries. This work responds to the ethics of tele-healthcare in rural communities in Canada and contributes perspectives of community-based service providers, advisors, and researchers. (shrink)

Introduction Expressions of Managerial ethics as a clinical phenomenon in Nursing Ethics as expressed by nurse managers were investigated. A coherence could be detected between the concepts and phenomena of Managerial ethics and nurse managers as a context. Background Managerial ethics as a new approach has emerged in the perspective and by prioritizing ethics in the organization has provided the basis for creating and promoting individual and organizational effectiveness. Managers’ and staff’s adherence to professional (...) class='Hi'>ethics helps hospitals to achieve their intended goals. Aim The present study aimed to explain nurse managers’ experience of managerial ethics. Research design This qualitative study was conducted based on a phenomenological design in 2022. Participants and research context The participants included 20 nurse managers working in hospitals in Arak, Iran. They were selected by the purposive sampling method which continued until data saturation. Data were collected through semi-structured individual interviews (30–90 min); subsequently, the obtained results were analyzed using the Van Manen six-step approach. Ethical considerations The confidentiality and the right of participants to take part or withdraw from the study were observed during this research. Results The results of the present study were able to demonstrate nurse managers’ lived experience of managerial ethics in the form of five themes of professional ethics, people-oriented management, professional empowerment, excellencism, and patient-centered care. Conclusions As evidenced by the obtained results, nurse managers held a positive view of managerial ethics. They were striving to strongly adhere to ethical principles in nursing management since they contribute greatly to the improved quality of nursing services in care and health settings. Therefore, appropriate policy-making and planning for managerial ethics training are indispensable for all nurses and nursing students. (shrink)

Background Respect is essential to providing high quality healthcare, particularly for groups that are historically marginalized and stigmatized. While ethical principles taught to health professionals focus on patient autonomy as the object of respect for persons, limited studies explore patients’ views of respect. The purpose of this study was to explore the perspectives of a multiculturally diverse group of low-income women living with HIV (WLH) regarding their experience of respect from their medical physicians. Methods We analyzed 57 semi-structured (...) interviews conducted at HIV case management sites in South Florida as part of a larger qualitative study that explored practices facilitating retention and adherence in care. Women were eligible to participate if they identified as African American (n = 28), Hispanic/Latina (n = 22), or Haitian (n = 7). They were asked to describe instances when they were treated with respect by their medical physicians. Interviews were conducted by a fluent research interviewer in either English, Spanish, or Haitian Creole, depending on participant’s language preference. Transcripts were translated, back-translated and reviewed in entirety for any statements or comments about “respect.” After independent coding by 3 investigators, we used a consensual thematic analysis approach to determine themes. Results Results from this study grouped into two overarching classifications: respect manifested in physicians’ orientation towards the patient (i.e., interpersonal behaviors in interactions) and respect in medical professionalism (i.e., clinic procedures and practices). Four main themes emerged regarding respect in provider’s orientation towards the patient: being treated as a person, treated as an equal, treated without blame or prejudice, and treated with concern/emotional support. Two main themes emerged regarding respect as evidenced in medical professionalism: physician availability and considerations of privacy. Conclusions Findings suggest a more robust conception of what ‘respect for persons’ entails in medical ethics for a diverse group of low-income women living with HIV. Findings have implications for broadening areas of focus of future bioethics education, training, and research to include components of interpersonal relationship development, communication, and clinic procedures. We suggest these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery. (shrink)

Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as ubuntu and ujamaa and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformative shift in health research data governance (...) in Africa that could help create a sense of shared responsibility between all stakeholders in genomics and data‐driven health research in Africa. This shift includes proposing a social contract for genomics and data science in health research that is grounded in African communitarianism such as solidarity, shared decision‐making, and reciprocity. We make several recommendations for a social contract for genomics and data science in health, including the coproduction of genomics knowledge with study communities, power sharing between stakeholders, public education on the ethical and social implications of genetics and data science, benefit sharing, giving voice to data subjects through dynamic consent, and democratizing data access to allow wide access by all research stakeholders. Achieving this would require adopting participatory approaches to genomics and data governance. (shrink)

Photo ID 222412412 © US Navy Medicine | Dreamstime.com ABSTRACT In a non-military setting, the answer is clear: it would be unethical to treat someone based on non-medical considerations such as nationality. We argue that Battlefield Triage is a moral tragedy, meaning that it is a situation in which there is no morally blameless decision and that the demands of justice cannot be satisfied. INTRODUCTION Medical resources in an austere environment without quick recourse for resupply or casualty evacuation are often (...) limited. The shortage extends not only to supplies like blood products and drugs, but physicians and other medical personnel. In the midst of a mass casualty scenario, such as a battle that includes intense ground fighting, the medical staff will stretch scarce resources and triage casualties according to specific criteria. Typically, they proceed by providing care for the most severely wounded first, referred to here as conventional triage. At times, though, the staff may reverse the triage so that soldiers with minor wounds can return to the fight. In a mass casualty situation, when medical personnel apply conventional triage and treat casualties from opposing forces, a dilemma may arise. We argue that it can be permissible for military physicians to prioritize their own soldiers over enemy combatants in a mass casualty triage, where reverse triage does not apply. The case we will focus on is as follows: Battlefield Triage: During combat operations on a remote island in the Pacific Ocean, a compatriot soldier and an enemy combatant arrive at the compatriot soldier country’s medical treatment facility. Both have similar gunshot wounds to the abdomen, and they arrive with similar conditions. Both have low oxygen saturation and excessive blood loss. The sole physician only has enough time to stabilize one person. The scenario is brief, and we are aware that medical rules of eligibility will most often dictate how the physician proceeds,[1] but this scenario is useful in setting up the question we focus on in this paper: would it be wrong to favor the stabilization of a soldier just because the soldier is the physician’s compatriot? In other words, can nationality serve as an ethically justified tiebreaker in a situation such as Battlefield Triage?[2] In a non-military setting, the answer is clear: it would be unethical to treat someone based on non-medical considerations such as nationality. The AMA’s Code of Medical Ethics asserts that physicians have “ethical obligations to place patients’ welfare above their self-interest and above obligations to other groups.”[3] The World Medical Association’s Declaration of Tokyo affirms that “no motive, whether personal, collective or political, shall prevail against this higher purpose” of alleviating distress.[4] Physicians are taught early on that triage decisions must be medically indicated and made without consideration of factors such as race, ethnicity, religion, social status, and nationality. They are taught that public trust and obligations of justice grounded in equality demand that only medical indications be considered. But military physicians in a military setting are beholden to obligations, duties, and responsibilities as members of the military, and when these obligations, duties, and responsibilities conflict, as they do in Battlefield Triage, which loyalties win out and why?[5] Critics of partiality on national grounds argue that partiality undermines public trust in medicine and justice because everyone should be treated equally regardless of nationality.[6] Proponents of partiality argue that military obligations supersede equality and that justice requires partiality in such cases.[7] Despite the critics’ disagreement, both agree that there is a morally right, perhaps even blameless, course of action. Drawing on insights from virtue ethics, we argue that Battlefield Triage is a moral tragedy in which justice is unattainable and there is no action without moral cost. The assumption that there is a morally right choice is flawed. We argue that while no decision in this scenario is free from moral blame, there are reasons to favor treating one’s soldiers over enemy combatants. I. The Case Against Partiality There is a common assumption that there is a morally right or just decision in Battlefield Triage. A number of organizations and scholars claim that it is wrong for military physicians to favor their own soldiers on the grounds of nationality or some form of ‘group membership.’ (In a conflict involving service members from multiple nations working as a coalition, a soldier from an allied country may receive the same priority as the US service member due to ‘group membership.’) The World Medical Association’s WMA Declaration of Lisbon on the Rights of the Patient, which was reaffirmed in 2015, posits that, “[i]n circumstances where a choice must be made between potential patients for a particular treatment that is in limited supply, all such patients are entitled to a fair selection procedure for that treatment. That choice must be based on medical criteria and made without discrimination.”[8] This echoes what was set forth in Article 12 of the Geneva Conventions, which states that “[o]nly urgent medical reasons will authorize priority in the order of treatment to be administered.”[9] The argument for impartiality in Battlefield Triage is that every person is morally equal, and equality entails that medical distribution is, “based on a combination of medical need and urgency.”[10] This is in keeping with the bioethical principles that are generally applied.[11] II. The Case for Partiality On the other side, there are arguments that favoritism is the ethically right decision in Battlefield Triage.[12] The argument asserts that members of the military form a morally significant community of friends and participation in these relationships demands partiality. Just as parents have strong ethical duties to their children and not just any children, military personnel have ethical duties to their group, a group that involves an affirmation of mutual aid and support. Some have termed these ‘associative duties. According to Michael Gross, obligations of friendship, care, and solidarity “leave very little room for generally applicable principles of justice that would obligate a medic to treat enemy or non-compatriot wounded ahead of their compatriots.”[13] This is true in Battlefield Triage, but it may also be true even if the enemy’s soldier were more seriously wounded: “the ethics of small group cohesion, largely an ethics of care, mostly replaces the demands of impartial justice.”[14] In a more recent article, Gross explains that preferential treatment is ethically justified based on fighting capability and “the special obligations people owe friends, family, and, no less, comrades-in-arms.”[15] To not show partiality to the US soldier would be morally wrong on the grounds of friendship and mutual care.[16] III. The Moral Tragedy of Battlefield Triage Defenders and critics of Battlefield Triage favoritism based on nationality both frame their position as just or fair. For example, Justin List argues that physicians are “bound to practice medical neutrality,”[17] Marcus Adams denies that physicians “possess special ethical obligations” to enemy combatants because of their profession.[18] These perspectives assume that there is a morally right decision and that justice is attainable. The assumption that there is or can be a morally right Battlefield Triage decision, and we need to put our heads together to figure it out, remains strongly entrenched. However, the facts of the situation should give us pause; there are too many people and too few resources, and this demands a decision-making process that determines who will receive scarce resources. By its very nature, a battlefield triage decision has to be made based on some characteristic or value, a characteristic or value that will inevitably favor some at the expense of others. This is precisely why competing analyses “in the military context struggle to resolve these conflicts satisfactorily.”[19] Drawing on the insights of virtue ethics, we suggest that Battlefield Triage is a moral tragedy. Virtue ethics suggests that morality is about acting virtuously, which is to say that we should do what a virtuous person would do in the situation. Ethics is about figuring out how a just, wise, compassionate, loving, and fair person would act, and then doing that, as one grows in virtue. But life is not always clear cut, and it is possible that virtuous people may find themselves in a moral tragedy, a situation in which, through no fault of one’s own, a person must make a morally objectionable decision. After the action the virtuous person “emerges having done a terrible thing, the very sort of thing that the callous, dishonest, unjust, or in general vicious agent would characteristically do.”[20] Stated differently, a moral tragedy presents a virtuous person with two or more courses of action, all of which have a moral cost.[21] In Battlefield Triage, no matter how the physician goes about deciding, there is going to be defensible concern from those not saved. The fact that there are more people than can be helped fosters competing values in battlefield triage: maximize lives saved, treat people equally, treat the worse off, and support the war effort. Treating people equally may create tension between treating the worse off, maximizing lives saved, and supporting the war effort. Reverse triage is a case in point, as supporting the war effort conflicts with treating the worse off first, as is a fair lottery system since deploying a lottery may not maximize lives saved or support the war effort. There can be reasons why one person is selected over another, to be sure. Yet, there are reasons for making a decision, and that the decision is subject to legitimate moral concern is another. To recognize the moral tragedy of Battlefield Triage is to recognize the impossibility of acting blamelessly in the situation. In this situation, the virtuous military physician is going to have to sacrifice important values such as justice, compassion, and respect for others, even with a defensible criterion in hand. The physician will grieve this sacrifice accordingly. The physician may find her decision difficult or stressful, and rightly so, because of what her circumstances require of her. This kind of moral tragedy results “in actions which betray and violate the rights of persons to whom there may be a strong duty of care. When this happens, it properly triggers an appropriate moral emotion since our moral integrity has been violated and this affects how we think of ourselves and what we have become.”[22] Rather than view her triage decision as the morally superior choice, the virtuous military physician will view her decisions in these circumstances in a different light: it is the least bad option in a terrible situation, and she did something ethically problematic, something that is contrary to her moral character. She deeply regrets the circumstances in which she had to act. IV. Virtue Ethics A virtue ethicist has insight into how one should go about deciding what to do in a moral tragedy, although virtue ethics may not be as helpful as one may hope. The goal of the virtuous military physician in Battlefield Triage is to adopt the best course of action or the action that she feels she ought to do, all things considered. This does not make her choice devoid of serious wrongdoing—a decision must be made, but that does not make it just. The virtuous military physician will approach the situation with courage, responsibility, and insight. She will think about the decision carefully, wisely, and conscientiously; she will weigh the goods and harms of the choices before her, in conjunction with a proper conception of the good life, human worth, and understanding of her obligations to others—including chain of command, fellow soldiers, and the medical community. She is attuned to the value of human life and has a reasonable idea of the various ways her decisions will affect others. She recognizes that she is in this non-ideal situation through no fault of her own: she is not the one fighting in battles; she is serving her country as a physician, whose job it is to save lives, treat everyone justly, and promote military objectives. She regrets the decision she is forced to make in battlefield triage, acting “with immense regret and pain,” Hursthouse explains, “instead of indifferently or gladly.”[23] This is because, no matter what decision is made, the virtuous military physician “does something terrible or horrible,” something she otherwise would not do and is contrary to her values.[24] V. A Resolvable Moral Tragedy Instead of asking whether there is a morally right decision, in which a decision is morally blameless and above reproach, the virtue ethicist asks whether there is a decision with a convincing rationale, knowing that a decision can have a clear rationale but still be morally tragic. It is perfectly reasonable to think that different virtuous persons will arrive at different courses of action: “two virtuous agents, in the same situation,” Hursthouse writes, “may act differently” in irresolvable moral tragedies, in cases in which there is no clear course of action.[25] Because a person must act in a moral tragedy, one goal is to identify reasons for choosing the chosen action. Some decisions are clearly indefensible—treating neither the compatriot soldier nor the enemy combatant in Battlefield Triage would be wrong—and some decisions are more problematic than others. If the military physician selects to treat the soldier because she does not like the enemy combatant’s skin color, such a reason would be deeply problematic. But much of the debate over how to act in a moral tragedy is not over clearly indefensible or problematic criteria. Instead, the literature is largely about different standards or implementations of justice. Some scholars defend nation-impartial triage as right, while others defend nation-aware triage as right, and each argues that the other side is promoting an unjust or otherwise wrong solution to Battlefield Triage. We suggest that Battlefield Triage is a resolvable moral tragedy and that virtue ethics offers convincing reasons to prefer the treatment of the compatriot soldier rather than the enemy combatant on the grounds of national identity. Virtues are integral to living a good life, a flourishing life, but as Aristotle observed long ago, human beings are inherently social, interdependent and interconnected in profound ways.[26] This goes beyond the obvious fact that we need each other to survive day to day (one person makes clothes, another farms, and another makes tools); the claim is that a good or flourishing life depends in large part on one’s social network or community. This is why many of Aristotle’s moral virtues are other facing: justice, friendship, generosity, and magnanimity, to name a few. Courage, a typically self-facing virtue, is understood by Aristotle to be the virtue that regards one’s fear of death in battle, a battle fought on behalf of one’s city.[27] All of this remains true today. Namely, there is an important sense in which our community matters to our lives: it is easier to live a good, flourishing life if one is part of a good, flourishing community. Our community is made up of smaller groups, and it is more accurate to say that we are simultaneous members of different groups within a broader community. A person may be part of a family, friend group, research team, large state university, city, state, and nation. Groups can function well or not, as we all have experienced, and this suggests that there are virtues or excellences that groups can instantiate. Good groups are unified in purpose, with each member doing their duty alongside others for the attainment of that purpose. Good groups manifest solidarity among their members. Although Aristotle does not list solidarity as a virtue, a number of modern-day virtue ethicists have begun examining how group solidarity can be a virtue that contributes to a good or flourishing life.[28] Solidarity is not conceptualized as an individual virtue, a virtue possessed by a person in isolation of others; instead, it is a collective virtue, a virtue that is shared among members of a defined group with particular ends.[29] “A group has solidarity to the extent that its members are disposed to: (1) share values, aims, or goals; (2) care about those values, aims, or goals; (3) act in accordance with those values, aims, or goals; (4) trust the testimony of other group members with respect to those values, aims, and goals; and (5) feel a sense of belonging to the group.”[30] The virtue of collective or group solidarity involves individuals having special concern for each other, shared aims and values, trust, loyalty, and a sense of belonging with these specific others. There is a oneness to the group in the pursuit of a definite goal or purpose, involving mutual support and affirmation of each member. As such, the group has ends and goods above and beyond the good of each individual person. Sometimes solidarity requires personal sacrifice for the collective (for example, a father sacrificing food so his child can eat). The virtue of collective or group solidarity is important to the military and medical community at every level, and for clear reasons. In the military, there is a clear hierarchy of command, unity of purpose and end, mutual trust and support in complex settings, and so on. Soldiers need to know they can count on one another, and solidarity grounds a soldier’s ability to trust others and be assured of mutual aid. In medicine, solidarity maintains self-regulation of the profession, shared values and goals, as well as public support, not to mention that day-to-day operations require physician trust, engagement, and effort toward the ends of clinical care. Physicians need to work together, along with others, in pursuit of health, and disunity is sowed when there is mistrust, selfishness, or disengagement among the healthcare team and organization. Importantly, just as we are all members of various groups and hence may manifest group solidarity in different settings, the virtuous military physician instantiates collective solidarity with both the medical profession and the military. Her dual loyalty contributes to the moral difficulty of acting in Battlefield Triage. The military physician has competing obligations to distinct groups and cannot satisfy all obligations in Battlefield Triage. Solidarity with the military supports the consideration of favoring the soldier for reasons of national identity, whereas solidarity with the medical community does not. Something has to give, which is why it is a moral tragedy. The virtuous military physician, therefore, must weigh the costs of each course of action. To fulfill her obligations to the medical community would require that she does not use nationality and other non-medical considerations in Battlefield Triage. Since the soldier and enemy combatant are equally injured, justice would demand a random process, perhaps a flip of the coin. Although this may satisfy obligations the military physician has to the medical community, this would be costly to the physician’s military group. If word gets out that the physician decides who to treat based on a coin toss, soldiers, families, and citizens may become frustrated and angry. Soldier morale may go down if it becomes known that a coin flip led to the preventable death of a soldier and the saving of an enemy combatant who had killed (or attempted to kill) other soldiers. As Gross highlights, military solidarity involves a mutual aid promise that military personnel promise to help one another.[31] A military physician is part of the military and, as such, is part of the mutual aid promise, which would appear to be violated if the physician flips a coin. Treating a member of one’s own team may be psychologically more beneficial than treating an enemy combatant and may lead to less moral distress.[32] Finally, treating soldiers rather than enemy combatants promotes broader military and social aims, including returning soldiers to health, maintaining unity of purpose, and minimizing community suffering from a soldier’s death. Favoring members of one’s group, that is, triage based on nationality in Battlefield Triage, would fulfill obligations of military group loyalty, which is contrary to the values and duties of medicine. It does not seem as though showing favoritism in this particular situation is very costly to the medical community or general public, but this is because there is recognition that the physician is in the military. Medicine is impartial to non-medical indications partly because of fairness and to promote public trust in medicine. However, Battlefield Triage is unique, as medicine is being practiced in a non-public, wartime setting. In ordinary circumstances, a patient’s identity is irrelevant, and physicians ought not play favorites. Since Battlefield Triage is not an ordinary circumstance, decisions based on patient identity may not undermine public trust in medicine. In addition, it is contestable that fairness in Battlefield Triage requires that no consideration be paid to one’s nationality. Fairness is about giving each person their due, what is owed to them, and the case can be made that soldiers who place themselves in danger for the sake of the common good or a just cause are owed special attention when they suffer harm in the line of duty. In other words, soldiers voluntarily undergo risk to themselves for the greater good, and society owes them for this sacrifice. This plausibly includes preferential treatment in a situation such as Battlefield Triage. So, while the medical community affirms justice demands non-preferential treatment, the military community can affirm the opposite. The demands of fairness are unclear at best or in conflict in this situation: demands of physician justice decry favoritism, while demands of military justice support favoritism. Triage not based on nationality is arguably unfair and triage based on nationality may not undermine public trust, after all. All things considered, there is a clear rationale for favoring nationality-based preferential treatment in Battlefield Triage. Adopting a nationality-based preference in this situation is more defensible than not. This does not make such a decision ethically right or just. Preference based on nationality is the least bad decision, but it is not morally blameless. It involves one in a serious moral wrong, a wrong otherwise avoided and contrary to one’s character. The virtuous military physician is in a situation in which obligations conflict, and we disagree with Gross, who posits that care of fellow soldiers “is important to the near exclusion of all else.”[33] Gross fails to appreciate the collective virtue of solidarity as applied to those in medicine. The military physician has duties to fellow soldiers but also to fellow physicians, to the medical community, and humanity. To favor a soldier on grounds of nationality violates her duties and responsibilities to this latter group. She is involved in a moral tragedy and can only seek the most just action given the circumstances, yet, at least in virtue ethics, the action remains far from blameless. CONCLUSION We argue that Battlefield Triage is a moral tragedy, meaning that it is a situation in which there is no morally blameless decision and that the demands of justice cannot be satisfied. As such, the virtuous military physician incurs a moral cost to acting as she does—there is a moral residue. However, despite being a moral tragedy, there are clear reasons to act in favor of treating one’s own, considering group solidarity. As such, these kinds of tragedies are resolvable: virtuous military physicians should favor treatment of their own, although they would do so with sorrow. - [1] Militaries set forth medical rules of eligibility or guidelines used to determine whether a person qualifies for specific medical interventions or treatments in certain circumstances, and these guidelines are binding for a military physician. For example, despite opposition from medical organizations, militaries have adopted reverse triage guidelines for military physicians to follow. For ethical discussion, see Falzone, Elisabeth, P. Pasquier, C. Hoffmann, O. Barbier, M. Boutonnet, A. Salvadori, A. Jarrassier, J. Renner, B. Malgras, and S. Mérat. "Triage in military settings." Anaesthesia Critical Care & Pain Medicine 36, no. 1 (2017): 43-51. https://doi.org/10.1016/j.accpm.2016.05.004 [2] There are issues that are related to this, including the triage of civilians and allied soldiers. We set related issues aside for purposes of this paper [3] American Medical Association, Code of Medical Ethics: Current Opinions with Annotations, 2004–2005 ed. (Chicago, IL: AMA, 2004), 300. [4] American Medical Association, Code of Medical Ethics: Current Opinions with Annotations, 2004–2005 ed. (Chicago, IL: AMA, 2004), 300. [5] This is termed the “dual loyalty” dilemma in military medicine and has been described at length elsewhere: Institute of Medicine (US) Board on Health Sciences Policy. Military Medical Ethics: Issues regarding Dual Loyalties: Workshop Summary. Washington (DC): National Academies Press (US); 2008. Toward a Framework for Resolving Dual Loyalties. Available from: https://www.ncbi.nlm.nih.gov/books/NBK214853/ [6] See Kenneth G. Swan and K.G. Swan, Jr., “Triage: The Past Revisited,” Military Medicine 161:8 (1996): 448–452. https://doi.org/10.1093/milmed/161.8.448; Jerome A. Singh, “American Physicians and dual loyalty obligations in the ‘war on terror,’” BMC Medical Ethics 4.4 (2003): 1–10. https://doi.org/10.1186/1472-6939-4-4; Beam, Thomas E. "Medical Ethics on the Battlefield." Military Medical Ethics: Sect. IV. Medical ethics in the military. Medical ethics on the battlefield: the crucible of military medical ethics 2 (2003): 369-402; Hereth, Blake. "Health justice for unjust combatants." Journal of Military Ethics 20, no. 1 (2021): 67-81. https://doi.org/10.1080/15027570.2021.1949782. [7] See Adams, Marcus P. "Triage priorities and military physicians." In Physicians at war: The dual-loyalties challenge, pp. 215-236. Dordrecht: Springer Netherlands, 2008. Gross, Michael L. "Comradery, community, and care in military medical ethics." Theoretical medicine and bioethics 32 (2011): 337-350. https://doi.org/10.1007/s11017-011-9189-6. Gross, Michael L. "The limits of impartial medical treatment during armed conflict." In Military medical ethics for the 21st century, pp. 71-84. Routledge, 2016. [8] World Medical Association, WMA Declaration of Lisbon on the Rights of the Patient. 5 December 2022, https://www.wma.net/policies-post/wma-declaration-of-lisbon-on-the-rights-of-the-patient/ [9] Geneva Convention for the Amelioration of the Condition of Wounded, Sick in Armed Forces in the Field. 12 August 1949. https://www.un.org/en/genocideprevention/documents/atrocity-crimes/Doc.30_GC-I-EN.pdf. [10] List, Justin M. "Medical neutrality and political activism: physicians' roles in conflict situations." In Physicians at war: The dual-loyalties challenge, pp. 237-253. Dordrecht: Springer Netherlands, 2008. 240 [11] Beauchamp, T., and J. Childress. 2013. Principles of Biomedical Ethics, 7th ed. Oxford, United Kingdom: Oxford University Press. [12] Adams, Marcus P. "Triage priorities and military physicians." In Physicians at war: The dual-loyalties challenge, pp. 215-236. Dordrecht: Springer Netherlands, 2008. [13] Gross, "Comradery, community, and care in military medical ethics," 347. [14] Gross, “Comradery, community, and care in military medical ethics,” 349. [15] Gross, Michael L. "When medical ethics and military ethics collide." Narrative inquiry in bioethics 13, no. 3 (2023): 199-204. 202 https://dx.doi.org/10.1353/nib.2023.a924191 [16] Our argument draws on virtue ethics, from which care ethics derives, and it is worth clarifying how our argument relates to Gross’s. We do not think that the virtue of friendship grounds triage decisions, for we think it is unlikely that the physician and wounded soldier are friends. Instead, as explained below, we think the collective virtue of group solidarity better captures the moral significance of group loyalty and that Gross would agree with us. But since military physicians are part of distinct groups, with competing obligations, the military physician will be forced to sacrifice a value in battlefield triage cases. In other words, we think Gross downplays the dual group membership of a military physician. [17] List,”Medical neutrality and political activism,” 250. [18] Adams,”Triage priorities and military physicians,” 235. [19] London, Leslie, Leonard S. Rubenstein, Laurel Baldwin-Ragaven, and Adriaan Van Es. "Dual loyalty among military health professionals: human rights and ethics in times of armed conflict." Cambridge Quarterly of Healthcare Ethics 15, no. 4 (2006): 381-391. 383. [20] Hursthouse, R. On Virtue Ethics. OUP 1999. 74 [21] Nussbaum, Martha C. "The costs of tragedy: Some moral limits of cost-benefit analysis." The Journal of Legal Studies 29, no. S2 (2000): 1005-1036, 1007. [22] De Wijze, S. (2005). Tragic-remorse–the anguish of dirty hands. Ethical theory and moral practice, 7(5), 453-471, 457. https://doi.org/10.1007/s10677-005-6836-x [23] Hursthouse, 73 [24] Hursthouse, 81 [25] Hursthouse, 72 [26] Aristotle, Politics 1253a8. Reeve, C. D. C., Indianapolis: Hackett Publishing Co., 2017 [27] Aristotle, Nicomachean Ethics. III.6.114a, 34-35. 2002, Nicomachean Ethics, Christopher Rowe (trans.), Oxford: Oxford University Press [28] Byerly, T. Ryan, and Meghan Byerly. "Collective virtue." The Journal of Value Inquiry 50, no. 1 (2016): 33-50. https://doi.org/10.1007/s10790-015-9484-y; Federico, Veronica. "Conclusion: solidarity as a public virtue." Solidarity as a Public Virtue (2018): 495-542. https://doi.org/10.5771/9783845290058. Rehg, William. "Solidarity and the common good: An analytic framework." Journal of Social Philosophy 38, no. 1 (2007): 7-21. https://doi.org/10.1111/j.1467-9833.2007.00363.x [29] Byerly and Byerly. "Collective virtue." 43 [30] Battaly, Heather. "Solidarity: Virtue or vice?." In Social virtue epistemology, pp. 303-324. Routledge, 2022. 304 [31] Ibid., 2011: 341 [32] It might be thought that displaying altruism by helping an enemy combatant at the expense of one’s fellow soldier may be psychologically satisfiying. For evidence that military physicians find it difficult to treat enemy combatants, see Lundberg, Kristina, Sofia Kjellström, Anders Jonsson, and Lars Sandman. "Experiences of Swedish military medical personnel in combat zones: adapting to competing loyalties." Military medicine 179, no. 8 (2014): 821-826. https://doi.org/10.7205/MILMED-D-14-00038. Lamblin, Antoine, Clément Derkenne, Marion Trousselard, and Marie-Ange Einaudi. "Ethical challenges faced by French military doctors deployed in the Sahel (Operation Barkhane): a qualitative study." BMC Medical Ethics 22 (2021): 1-13. https://doi.org/10.1186/s12910-021-00723-2 [33] Ibid., 2011: 344. (shrink)

Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple (...) stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. Results The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations among research stakeholders. The involvement of community leaders, government stakeholders, and power inequalities among research stakeholders affected some participants’ ability to make autonomous decisions about research participation. These results have been presented under the themes of perception of research as development, research participants’ motivation to access individual benefits, the power of vernacular translations to influence research participation, and coercive power of leaders. Conclusion The study identified ethical issues in community engagement practices pertaining to structural coercion. We conclude that community engagement alone did not address underlying structural inequalities to ensure adequate protection of communities. These results raise important questions on how to balance between engaging communities to improve research participation and ensure that informed consent is voluntarily given. (shrink)

Only somewhat recently has a specific literature emerged focused on the ethics of engaging patient and community stakeholders in health research. This literature is informed by a broad range of disciplinary frameworks and norms. It also overlaps with – and diverges from – traditional research ethics scholarship in interesting and important ways. This volume is an effort to bring together, in one place, important perspectives on the ethics of stakeholder engagement in health research. (...) Here, ethics, patient and community stakeholders, and health-related research are all conceptualized broadly. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:An Interesting Framework That Deserves to Be Developed and Used WidelyThe author reports no conflict of interests.Friesen's "Why Democratize Psychiatric Research?" is an important piece of work and makes a compelling epistemic and ethical case. As someone who has spent decades in the field of (in chronological order): survivor involvement, service user involvement, patient and public involvement and now lived experience; I am delighted when I see (...) a robust reminder of the reasons why we need to take this seriously. The author is right to stop us sleepwalking into an activity because funders expect it, psychiatry now prides itself on it, and academics write countless pieces on it. People who have not lived in a time when our involvement in research was entirely counter-cultural (or even symptomatic of a patient lacking insight) could be forgiven for thinking it was always like this.There are, however, three themes that could and should be developed from this thinking. They concern assumptions about general medicine, the institutional discrimination within psychiatry, and the significant cultural change that has occurred since the rise of the survivor movement as one of the later rights movements of the last century.Many years ago, I would have made the same argument about how psychiatry lacks the objectivity and testable biomarkers of general medicine. As I have spent more time with assorted medics, many at the top of their game, it is clear that there is much more subjectivity across much of medicine and rather than place psychiatry as uniquely needing more democratic research (a proposition I wholeheartedly endorse), I would love to see us take these arguments into medicine as a whole. Until we do this, we risk "othering" psychiatry as a whole rather than showing an area in which psychiatric patients (or survivors, or service users, or people with lived experience, as you wish) can become leaders in progressive medical thinking.A more important omission which needs significant addressing if we genuinely are to democratize psychiatric research is the racial inequality within psychiatric practice. There are many inequalities both within psychiatry and in broader society that contributes to mental health inequalities, but the experience of racialized communities, in our [End Page 139] psychiatric services has been a consistent theme. For those unfamiliar with the extent of difference between White and Black experience of UK psychiatry you need only look at the differential rates of detention under mental health legislation. National Health Service data show that people from minority ethnic groups are more likely to experience compulsory detention than their White counterparts. In 2020/21, rates of detention by ethnicity were Black or Black British: 309.4 per 100,000 people compared with White: 76.2 per 100,000 people (National Health Service Digital, 2021.)If we are to truly democratize research in psychiatry, we need to more actively engage racialized communities and ensure that they are leading and coproducing more of our research. Although this forms part of the argument in feature #3, it warrants being front and center of features #1 and #4 where the differences between Black and White are so marked.We as democratizing researchers should be carrying an anti-racist banner high and doing more to both improve our own practice and constantly challenge a psychiatry that has failed, review after review, to address this. The Whiteness and Race Equality Network, part of the Collaborating Centre for Values Based Practice1 is working hard on this theme but much more is needed.The final challenge which needs addressing, and one which certainly needs the analytical skill and clarity of thinking that Friesen has applied throughout, is the breadth and diversity of what now constitutes "lived experience" in mental health. Even if we restrict our scope to psychiatry, this is a much broader research field than when survivor research started to be taken seriously. The vast majority of survivor researchers would have spent considerable periods of time as inpatients in psychiatric hospitals, often as detained patients. None of us would have chosen to self-diagnose, most of us would have done all we could to shed our diagnostic labels, some of us find it hard to forget... (shrink)

BackgroundCarefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/aids, without increasing burdens. Such studies, however, must navigate a ‘vulnerability paradox’, since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/aids (ALH) in Kenya, we develop an account of researchers’ responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency (...) as ‘interacting layers’.MethodsUsing a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders’ perspectives on vulnerability and resilience of young people living with HIV/aids, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna’s layered account of vulnerability.ResultsALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.ConclusionsThe most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers’ responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities. (shrink)

In this paper we examine ethical issues relevant to conducting mental health research with refugees and immigrant communities that have cultural orientations and social organisation that are substantially different to those of the broader Australian community, and we relate these issues to NH&MRC Guidelines. We describe the development and conduct of a mental health research project carried out recently in Melbourne with the Somali community, focusing on ethical principles involved, and relating these to the NH&MRC National (...) Statement on Ethical Conduct in Research Involving Humans, and the NH&MRC document Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research.The experience of conducting mental health research with the Somali community highlights the fact that the principles of inclusion and benefit enunciated in the NH&MRC document Values and Ethics are particularly pertinent when conducting research with refugees and immigrant communities that are culturally distant to those of the broader Australian community. These principles inform issues of research design and consent, as well as guiding respectful engagement with the participating community and communication of the research findings. (shrink)

Background The significance of medical implants goes beyond technical functioning and reaches into everyday life, with consequences for individuals as well as society. Ethical aspects associated with the everyday use of implants are relevant for individuals’ lifeworlds and need to be considered in implant care and in the course of technical developments. Methods This scoping review aimed to provide a synthesis of the existing evidence regarding ethically relevant psychosocial and cultural aspects in cochlear, glaucoma and cardiovascular implants in patient-centered (...) empirical research. Systematic literature searches were conducted in EBSCOhost, Philpapers, PsycNET, Pubmed, Web of Science and BELIT databases. Eligible studies were articles in German or English language published since 2000 dealing with ethically relevant aspects of cochlear, glaucoma and passive cardiovascular implants based on empirical findings from the perspective of (prospective) implant-wearers and their significant others. Following a descriptive-analytical approach, a data extraction form was developed and relevant data were extracted accordingly. We combined a basic numerical analysis of study characteristics with a thematically organized narrative synthesis of the data. Results Sixty-nine studies were included in the present analysis. Fifty were in the field of cochlear implants, sixteen in the field of passive cardiovascular implants and three in the field of glaucoma implants. Implant-related aspects were mainly found in connection with autonomy, freedom, identity, participation and justice, whereas little to no data was found with regards to ethical principles of privacy, safety or sustainability. Conclusions Empirical research on ethical aspects of implant use in everyday life is highly relevant, but marked by ambiguity and unclarity in the operationalization of ethical terms and contextualization. A transparent orientation framework for the exploration and acknowledgment of ethical aspects in “lived experiences” may contribute to the improvement of individual care, healthcare programs and research quality in this area. Ethics-sensitive care requires creating awareness for cultural and identity-related issues, promoting health literacy to strengthen patient autonomy as well as adjusting healthcare programs accordingly. More consideration needs to be given to sustainability issues in implant development and care according to an approach of ethics-by-design. (shrink)

The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects (...) of this interplay: (i) that taking individual informed consent seriously involves understanding and addressing the influence of communities in which individuals’ lives are embedded; (ii) that individual participation can generate risks and benefits for communities as part of the wider implications of research. We further argue that the contingent nature of a community means that defining boundaries is generally a normative process itself, with ethical implications. Community engagement supports the enactment of normative roles; building mutual understanding and trust between researchers and community members have been important goals in Kilifi, requiring a broad range of approaches. Ethical dilemmas are continuously generated as part of these engagement activities, including the risks of perverse outcomes related to existing social relations in communities and conditions of ‘half knowing’ intrinsic to processes of developing new understandings. (shrink)

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely (...) opportunity to examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)

Cultural values influence how people understand illness and dying, and impact their responses to diagnosis and treatment, yet end-of-life care is rooted in white, middle class values. Faith, hope, and belief in God’s healing power are central to most African Americans, yet life-preserving care is considered “aggressive” by the healthcare system, and families are pressured to cease it.

Background: A total of 71,000 people in Norway suffer from some form of dementia in 2013, of whom approximately 30,000 are in nursing homes. Several studies focus on the experiences of those who have close relatives and who are staying in a nursing home. Results show that a greater focus on cooperation between nursing staff and relatives is a central prerequisite for an increased level of care. Benefits of developing systematic collaboration practices include relief for nursing staff, less stress, and (...) greater mutual understanding. Going through studies focusing on the experiences of nursing home patients’ relatives, negative experiences are in the majority. In this study, relatives are invited to share positive experiences regarding the care of their loved ones; a slightly different perspective, in other words. Aim: The aim of the study is to investigate relatives of persons with dementia’s experiences with quality care in nursing homes. Method: The study is a part of a larger project called Hospice values in the care for persons with dementia and is based on a qualitative design where data are generated through narrative interviews. The chosen method of analysis is the phenomenological–hermeneutical method for the study of lived experiences. Participants and research context: Participants in the project were eight relatives of persons with dementia who were living in nursing homes, long-term residences. The sampling was targeted, enrolment happened through collective invitation. All relatives interested were included. Ethical considerations: The Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services approve the study. Findings: Findings show that relatives have certain expectations as to how their loved ones ought to be met and looked after at the nursing home. The results show that in those cases where the expectations were met, the relatives’ experiences were associated with engagement, inclusion and a good atmosphere. When the expectations were not met, the relatives experienced powerlessness, distrust and guilt. Discussion: The results are discussed considering the concepts of trust, power and asymmetry. Conclusion: When asked about experiences with quality care, the relatives spoke both of expectations met and of expectations not met. Results in this study are important knowledge for developing units where performing quality care is the overall aim. (shrink)

Positive Psychology Interventions as an Opportunity in Arab Countries to Promoting Well-being AbstractIn this perspective paper, we emphasize the importance of further research on culturally-sensitive positive psychology interventions in the Arab region. We argue that these interventions are needed in the region because they not only reduce mental health problems but also promote well-being and flourishing. To achieve this, we shed light on the cultural elements of the Arab region and how the concept of well-being differs from that of (...) Western culture. We review the research conducted in Arabia, briefly evaluate the quality of this research and list some adapted measurements. We furthermore propose guidelines and recommendations for future evidence-based positive psychology interventions research to align with the national culture in various sectors and community samples that contribute to the development of well-being in the Arab world.Introduction Extensive research on Positive Psychology Interventions (PPIs) - defined as activities focus on promoting positive feelings, thoughts, or behaviour (Sin & Lyubomirsky, 2009) - has shown their effectiveness in well-being and mental illness (e.g., Chakhssi et al., 2018; Hendriks et al., 2020). A recent review of 347 studies showed that PPIs have a significant effect on promoting quality of life and well-being and reducing anxiety and depression (Carr et al., 2020). However, the issue is that most of these studies (82%) remain narrow in focus only on Western Educated Industrialised Rich Democratic (WEIRD) countries (Hendriks et al., 2019). Therefore, they may not be effective for other countries such as the Arab countries where there are various cultural differences. This highlights the key role that culture can play in enhancing PPIs engagement, acceptability, and eventually, effectiveness (Hendriks & Graafsma, 2019). Recently, the field of PP in the Arab region has begun to grow (Basurrah et al., 2021; Rao et al., 2015). However, studies conducted in these countries are scant and of poor methodological quality. We have found humble quantity and quality of empirical studies. Yet, Arab countries, home to 5% of the world’s population, have a burden of mental health problems above global levels (GBD 2015 Eastern Mediterranean Region Mental Health Collaborators, 2018). Prevalent stigma, war and conflict were some of the contributors (Maalouf et al., 2019). Thus, to properly address this cultural stigma against mental health problems, PPIs could provide an additional role alongside traditional psychology approaches (e.g., Cognitive Behavioural therapy - CBT). Further, in light of the political conditions that some Arab countries are going through and the negative effects that they cause, it has become necessary to use the method of prevention that is the focus of PP and not only of treatment as a strategy for applications and practice. It has been noted that the mental health care system in the Arab region focuses highly on illnesses treatment and neglects the significant role that PP plays in enhancing human potential and well-being. We - here in Arabia –are becoming more influenced by many global issues particularly the COVID-19 pandemic and their impact on mental health and well-being (e. g. prevalence of stress, anxiety, depression among the general population during the pandemic (Salari et al., 2020). In response, Waters et al. (2021) have recently presented how positive psychological factors can play a significant role in buffering mental illness, enhancing mental health throughout the pandemic, and building positive processes and capacities that can help to promote future mental health.Here in this perspective paper, we highlight the cultural aspects of Arab countries. Specifically, we present previous PPIs research conducted in Arabia and briefly evaluate the quality of this research. Importantly, we discuss the need of developing an indigenous and culturally sensitive PP among the Arab region (Lambert et al., 2015).Arab Culture “Arab World,” which comprises 5% of the world’s population, refers to the Arab countries in the Middle East and North Africa. Despite the increasing pace and progress of different businesses in many Arab countries, individual communities are still limited in certain prominent economic places. Arab people rather gather in collective communities. They generally share the same Arabic Islamic culture, speak the same language, and descend from the same Arab families when going back in history no matter what nationality they have nowadays. Yet, very many changes came to communities before borders were drawn between countries and after. For instance, geography, topography, demography, and socio-economic status affect peoples’ nature of jobs and lifestyles. For example, Arabs in the east, west, or the middle have similar tongues; however, almost every Arab country has its accent. Therefore, people need to go back to the formal Arabic language ‘Fus-ha’ or learn more about different Arabic dialects when communicating cross-countries. According to Hofstede’s model (2011) based on the individualism-collectivism dimension, the Arab countries (Eastern society) have been classified as a collectivist culture, where their identity and decisions are influenced by social systems. In contrast, the United States (Western society) has been classified as an individualist culture focusing on individual decisions. Although there are degrees of individualism among Arabs in certain countries, they still share collective common characteristics. Here, we explore the meaning of collectivistic conceptions of the self, emotions, values, and religion in Arab countries and how they differ from those in individual Western cultures. The Self Since the field of PP focuses on the development of self, it is vital to recognize that self-concept varies across cultures. Individualism generally emphasises the self-directed and autonomous individual (Realo et al., 2002). People in individualist countries focus primarily on their personal characteristics (e.g., motives, abilities) to build their self-concept. On the other hand, collectivism refers to several social structures that highly value the groups to which people belong, such as family and tribe (Realo, 2003). People in collectivist countries such as the Arab countries focus primarily on their relationships with others to build their self-concept (Markus & Kitayama, 1991). Hence, research from Arab countries should focus on the core elements of collectivism when implementing PPIs to make a significant, meaningful impact. For example, people from a collective culture may experience a greater enhancement in well-being when practising interventions that are more prosocial and group-oriented such as compassion, performing acts of kindness, writing a gratitude letter, and using character strengths in everyday context including social context, compared with self-oriented interventions such as identifying character strengths. Emotions, value, and Religion Research shows that Western culture emphasises the goal of maximizing positive emotions, while Eastern culture emphasises embracing and balancing positive and negative emotions (Leu et al., 2011). To illustrate, culture plays an important role in influencing perceptions of happiness. People in individualist countries value happiness highly. In contrast, people from the collective countries value low arousal positive emotions (Leu et al., 2011) and exhibit a fear of happiness (Joshanloo & Weijers, 2014; Joshanloo, 2013). Hence, the influence of positive emotions plays a limited role in the mental health of Eastern society. Speaking of Value, for an Arab, the family is the centre of honour and the most important social unit. This loyalty has an impact on every part of an Arab’s life. Arabs honour their families and highly value their friendships. Therefore, future research could shed more light on group-oriented interventions (e.g., kindness) that focus more on the relationship with family, friends, and community. When it comes to religion, Arab society has a rich culture in values and believes that place a high emphasis on spirituality. Religion is the most important and distinctive aspect of Arab culture. Arab countries vary in terms of religion, with Islam being the predominant religion in most of them. Well-being (Hedonic and Eudaimonic) It is necessary here to clarify what is meant by hedonic and eudaimonic definitions of well-being. While the term ‘Hedonic’ is based on the pursuit of maximum levels of pleasure (feeling good), the term ‘Eudaimonic’, on the other hand, is based on meaning and the development of virtues (functioning well; Keyes & Annas, 2009). Research indicates that cultures are not equally supportive of hedonic and eudaimonic aspects (Joshanloo & Jarden, 2016). In comparison to collectivism, hedonism appears to be more congruent with individualism (Joshanloo, 2014). Pleasure and positive emotions are considered a way to pursue happiness in Western culture, while this method is not highly favoured in Eastern cultures (Lee et al., 2013); Because they consider suffering and negative emotions as contributing factors to spiritual development. Therefore, the eastern perspective is more in line with a eudaimonistic view which emphasises virtues, meaning, and feeling of belongingness. However, although we believe that both approaches can be found to a certain level in both cultures, the differences suggest that there are different routes to happiness. Positive Psychology in the Arab region Positive psychology - "the scientific study of what makes life most worth living" (Seligman & Csikszentmihalyi, 2000) - is one of the newest branches of psychology. It focuses on three main pillars: (1) positive subjective experiences (such as happiness and love); (2) positive individual characters (such as gratitude and compassion); and (3) positive institutions (for the application of positive principles within institutions and organizations; Seligman & Csikszentmiha lyi, 2000). Some of the main topics of interest in positive psychology include character strengths, gratitude, hope, happiness, mindfulness, optimism, positive thinking, and resilience. Within the applications of this science, various domains of well-being (such as happiness, engagement, positive emotions, and meaning) can be enhanced by practising positive psychology interventions (Sin & Lyubomirsky, 2009). Interestingly, these interventions have also produced benefits beyond well-being, such as reduced mental health issues (Chakhssi et al., 2018; Hendriks et al., 2020).Nowadays, PP is increasingly noticed in the Arab world (Lambert & Pasha-Zaidi, 2019; Rao et al., 2015). In recent years, there has been a great effort to explore the PP field across Arab countries. Several initiatives have emerged aimed at promoting well-being and flourishing. For example, the Middle East Journal of Positive Psychology published its first volume in 2015. On the International Day of Happiness in 2017, United Arab Emirates University launched its Emirates Center for Happiness Research. Meanwhile, Effat University in Saudi Arabia started the first Positive Psychology and Well-being Research Lab, the first symposium, and the first PP course. In 2019, Louise Lambert and Nausheen Pasha-Zaidi published the first regional text entitled “Positive Psychology in the Middle East/North Africa.” There are other efforts spent in the region as well; such as the work conducted in Egypt. Ibrahim Younus established the Arab Association for Positive Psychology https://www.psycholearn.com/en/associative.php which provides several courses on PP and also published a book entitled “The Power of Positive Psychology” (Younus, 2017). Despite this development, nothing can compare to the quantity and even quality of research in other countries. In light of our observations, the few PP studies may be attributed to the lack of awareness of the constructive approach and prevention compared to problem-solving. An Arab dentist once said: “people do not come to me until they are badly in pain.” In any case, many studies have taken place in Arab countries in the last decade, more of which are descriptive and less of which experimental. For example, Abdel-Khalek (2010) found positive correlations between quality of life, subjective well-being, and religiosity among students in Kuwait. Abdel-Khalek (2016) developed “the Arabic Scale of Religiosity,” which significantly correlated with PP variables among students in Algeria, Kuwait, and Egypt. Recently, empirical studies on PPIs have arisen in Arab-Islamic countries. More attention has been focused on promoting well-being and alleviating the high burden of mental health problems in the region (GBD 2015 Eastern Mediterranean Region Mental Health Collaborators, 2018). For instance, several studies examined the effectiveness of mindfulness among university students (e.g., Al-Ghalib & Slim, 2018; Awad, 2019; Thomas et al., 2016), parents of children with autism (Rayan & Ahmed, 2016) and addicted adults (Al-Rashidi, 2018). Such an intervention has positive effects. Participants who practised mindfulness reported reduction in stress and depression as well as improvement in well-being and resilience. Moreover, the results of a recent pilot study found positive impacts on enhancing emotional regulations and reducing stress among Arab teachers (Berkovich-Ohana et al., 2020). Some studies have also begun to examine various interventions targeting character strengths (Basurrah et al., 2020; Chérif et al., 2020), self-compassion (Elaiwah, 2017), positive thinking (Mohammed et al., 2014; Hadad, 2014), and hope (Zaki, 2016). Interestingly, a new finding considering the fear of happiness among people from collective countries has been examined. Lambert et al. (2019) provided evidence that a 14-week PPIs programme has an impact on reducing the fear and fragility of happiness beliefs among university students in the United Arab Emirates.Since Arab countries place great emphasis on spirituality, several authors have considered the aspect of religion when implementing PPIs. For instance, an empirical study by Al-Seheel and Noor (2016) found that expressing gratitude towards God “Allah” increases the happiness of the Muslim more than the usual gratitude intervention. Additionally, Al-Ghalib and Salim (2018) examined a religiously sensitive mindfulness-training programme with university students and found a positive effect on life satisfaction and a slight reduction in stress, depression, and anxiety. Hence, the role of religion is vital to make the interventions more relevant to Arab culture where people can connect Islamic philosophy with PP theories and practices. These studies reviewed here provide further support for the need for culturally sensitive interventions among the Arab population. More recently, the first systematic review of PPIs in Arab countries was conducted by Basurrah et al. (2021; the protocol has been published in BMJ Open and the final manuscript has been submitted for publication). Reviewing a total of 39 studies, the most commonly studied interventions were mindfulness, positive thinking, and resilience. Only a handful of studies examined gratitude, character strengths, forgiveness, self-compassion, savouring, or finding flow. Further analysis revealed that most studies from Arab countries have several methodological limitations. This included a lack of protocol guidelines, few well-designed randomized controlled trials (RCTs), blinding issues, small sample sizes, lack of active control groups, and lack of research into certain populations (e.g., teachers, employees, and people in distress in refugee camps). Discussion PP was founded on an individualistic framework (Christopher & Hickinbottom, 2008). To ensure that PPIs are culturally meaningful, this paper includes some cultural elements of the Arab region that should be considered to serve the needs of the Arab population. In the Arab world, some people may believe that PP is solely about happiness and being positive. If so, it is important to educate the public about the findings of rigorous studies evaluating PPIs such as gratitude, hope or flow on health, well-being and performance. To explain the value and effectiveness of these evidence-based approaches, examples might include studies linking gratitude with benefits for people with heart disease (Cousin et al., 2021), or how PPIs can promote quality of life in cancer patients (Casellas-Grau et al., 2014). There is some evidence about PPIs being effective in improving well-being in the Arab region, but research in this region is still in its infancy and little information is available regarding PPIs and the experience of Arabs participating in such interventions. Hence, there is still much more to investigate in this regard. Future research should empirically examine the effectiveness of various unstudied interventions such as savouring, gratitude, self-compassion, character strengths or finding flow. A combination of quantitative and qualitative approaches is required to provide an in-depth understanding of Arabs’ experience and impressions of PPIs and how and why they work. This may provide useful information to inform the appropriate design of PPIs to suit Arab culture and needs. Furthermore, while some research on PPIs has been carried out in the region, most of these studies have been of poor quality that suffered from small sample sizes, confounding factors, and a high degree of bias. To overcome these issues, future research should improve research quality, including protocol guidelines and well-designed RCTs. In particular, research should include randomization, allocation, blinding, power analysis to determine adequate sample size, active control groups to reduce bias, and follow-up periods of at least 12 months.Among the most popular resources that future PP practitioners may refer to are the International Positive Psychology Association (IPPA) and the International Positive Education Network (IPEN). Also, we recommend the Middle East Journal of Positive Psychology and the first regional book (Lambert & Pasha-Zaidi, 2019). To develop and/or adapt a multi-component PPIs, we would recommend referring to Character Strengths (Peterson & Seligman, 2004), the theory of well-being (PERMA Model: Positive Emotion, Engagement, Relationships, Meaning, and Accomplishment; Seligman, 2011), and the Five Ways to Well-being: Connect, Be Active, Take Notice, Keep Learning, and Give (Aked et al., 2008). Finally, single-component PPIs are based on theories like Broaden-And-Build (Fredrickson, 2004), Hope (Snyder et al., 2002), and Self-Determination (Deci & Ryan, 2012) can be also considered. Two other concepts that would be usefully applied are ‘Savouring’ (Bryant & Veroff, 2007) and Phillip Zimbardo’s Time Perspective (Stolarski et al., 2015). For instance, savouring has a positive temporal orientation to reminiscing the good memories from the past, enjoying the hedonic present moments, and willing proactively to make a better future. Now, what is even maybe more interesting for Muslims is “Transcendent Future” where all intentions, words and actions are devoted to that life after death. In addition, there is a model already prepared for the clinical purpose called Positive Psychotherapy (PPT). Tayyab Rashid and Martin Seligman published a PPT manual for clinicians in 2018. And for cross-cultural applications, including Muslim Arab culture, Rashid and Al-Haj Baddar (2019) have written a paper presenting PPT and its efficacy. PPT overview in detail shows sessions, themes, skills, practice, and cultural considerations where a mixture of PPIs based on PERMA, Strengths, and other PP concepts can be found. Regarding PP measurements, it is highly recommended to generate indigenous tools based on cultural backgrounds reviewed here in the article. An example of this is a tool for measuring Muslim well-being by including domains beyond what is found in Western literature. So far, in the Arab region, several attempts have been made to adapt PP tools. For example, Marei Salama-Younes (2018) validated the Arabic versions of different measures of well-being (e.g., satisfaction with life scale, the subjective vitality scale). Other validated scales as well include the self-compassion scale (Alabdulaziz et al., 2020), and the passion scale (Salama-Younes & Hashim, 2018). Conclusion This paper has discussed the cultural aspects of Arab countries and the need of developing culturally sensitive PPIs. The past decade has seen an increase in mental health problems in the Arab region. Stigma and lack of awareness have been always there. Among the issues are also wars, conflicts, and displacement in many Arab countries such as Iraq, Lebanon, and Palestine (Hassan et al., 2016). These indicate an urgent need to prevent mental illness and promote well-being. Indeed, we highlighted the importance of integrating culture with PPIs, following the guidelines for the cultural adaptation of PPIs (Hendriks & Graafsma, 2019) and the ethical guidelines for PP practice (Jarden et al., 2020). Another significant contribution of this paper is to highlight the importance of improving the quality of research conducted in Arab countries. In brief, this paper has several practical implications. It is an open invitation for researchers, policymakers, and practitioners alike to be more exposed to PP; as well as to better conceptualising and adapting interventions and measurement tools to the local culture in different sectors to maximize their effectiveness. And as we consider it as an invitation for us too, here we are starting a PPIs practice guide in Arabic language and for Arab practitioners. The insights gained from this paper may be useful for placing well-being on top of priorities for achieving individual, organizational, and optimal national functioning in different sectors. There is also a need to change the stigma or negative beliefs about seeking health for psychological support, which is an issue for countries in the Middle East (Baess, 2018). (shrink)

BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community (...) from research-related risks, as well as intrinsic goals such as promoting the respect of participants and their community. However, successful community engagement depends on the degree to which CABs legitimately represent and engage with communities targeted for research. Currently, there is little literature describing the use of CABs in genomics research taking place in developing countries, and even less in the field of genomics research relating to mental illness. The aim of this article is to describe and consider the contributions made by a researcher-driven, population-specific CAB in a genomics of schizophrenia research project taking place in South Africa, from the perspective of the research team.DiscussionFour broad discussion topics emerged during the CAB meetings namely: 1) informed consent procedures, 2) recruitment strategies, 3) patient illness beliefs and stigma experiences, and 4) specific ethical concerns relating to the project. The authors consider these discussions in terms of their contributions to instrumental and intrinsic goals of community engagement.SummaryThe CAB gave valuable input on the consent processes and materials, recruitment strategies and suggested ways of minimizing the potential for stigma and discrimination. All of these contributions were of an instrumental nature, and helped improve the way in which the research took place. In addition, and perhaps more importantly, the CAB made a unique and important contribution relating to intrinsic functions such as promoting the respect and dignity of research participants and their community. This was particularly evident in ensuring sensitivity and respect of the community’s traditional beliefs about schizophrenia and its treatment, and in this way promoting a respectful relationship between the research team and the participants. (shrink)

Global health research partnerships have many benefits, including the development of research capacity and improving the production and use of evidence to improve global health equity. These partnerships also include many challenges, with power and resource differences often leading to inequitable and unethical partnership dynamics. Responding to these challenges and to important gaps in partnership scholarship, the Canadian Coalition for Global Health Research conducted a three-year, multi-regional consultation to capture the research partnership experiences of stakeholders in South (...) Asia, Latin America, and sub-Saharan Africa. The consultation participants described persistent inequities in the conduct of global health research partnerships and called for a mechanism through which to improve accountability for ethical conduct within partnerships. They also called for a commitment by the global health research community to research partnership ethics. The Partnership Assessment Toolkit is a practical tool that enables partners to openly discuss the ethics of their partnership and to put in place structures that create ethical accountability. Clear mechanisms such as the PAT are essential to guide ethical conduct to ensure that global health research partnerships are beneficial to all collaborators, that they reflect the values of the global health endeavor more broadly, and that they ultimately lead to improvements in health outcomes and health equity. (shrink)

BackgroundStreet-connected children and youth in low- and middle-income countries have multiple vulnerabilities in relation to participation in research. These require additional considerations that are responsive to their needs and the social, cultural, and economic context, while upholding core ethical principles of respect for persons, beneficence, and justice. The objective of this paper is to describe processes and outcomes of adapting ethical guidelines for SCCY’s specific vulnerabilities in LMIC.MethodsAs part of three interrelated research projects in western Kenya, we created procedures to (...) address SCCY’s vulnerabilities related to research participation within the local context. These consisted of identifying ethical considerations and solutions in relation to community engagement, equitable recruitment, informed consent, vulnerability to coercion, and responsibility to report.ResultsSubstantial community engagement provided input on SCCY’s participation in research, recruitment, and consent processes. We designed an assent process to support SCCY to make an informed decision regarding their participation in the research that respected their autonomy and their right to dissent, while safeguarding them in situations where their capacity to make an informed decision was diminished. To address issues related to coercion and access to care, we worked to reduce the unequal power dynamic through street outreach, and provided access to care regardless of research participation.ConclusionsAlthough a vulnerable population, the specific vulnerabilities of SCCY can to some extent be managed using innovative procedures. Engaging SCCY in ethical research is a matter of justice and will assist in reducing inequities and advancing their health and human dignity. (shrink)

Promoting patient autonomy has become a key imperative in health service encounters. We will examine the potential negative effects of over-promoting patient autonomy and consider the impact on patient access, their experience and the provision of equitable services by focusing on an extreme manifestation of this trend, i.e. calls for patient involvement in health care decision making to be mandatory. Advocates of mandatory autonomy hold that patients have a duty to themselves, to society and (...) to the medical system to make decisions on their health care independently. Models of mandatory autonomy may be contrasted to those of optional autonomy that seek to ascertain patients’ decisional preferences and to understand wider limitations on their freedom to choose. Where choice as decisional responsibility becomes mandatory it ceases to promote agency and where autonomous choice is understood as an individualistic practice it will contribute to the cultural dominance of Western values. Moreover, taking a view that principlist ethics needs to take account of the social and cultural contexts of individual lives, we argue that if mandatory autonomy were to be over-emphasised as part of an ongoing move towards patient choice in UK National Health Service (NHS), educated and affluent people would be more able to exercise choices at the expense of people who are experienced in asserting preferences and who have the resources to make use of choices. We will argue that the promotion of autonomy needs to be tempered by steps to enable less powerful social, cultural and economic groups to contribute to decision making and to support individuals who may feel abandoned by having decisional responsibility transferred to them. Until constraints on individual choice can be understood and addressed, we advocate the model of optional autonomy used in shared decision making and make recommendations for practice, policy, education and research. (shrink)