Despite enthusiasm for patient-centered care, the practice of patient-centered care is proving challenging. Further, it is curious that the literature about this subject does not explicitly address patient autonomy, since patients guide care in patient-centered care, and respect for patient autonomy is a prominent health-care value. We argue that by explicitly adopting a relational conception of autonomy as an essential component, patient-centered care becomes more coherent, is strengthened, and could help practitioners to make better use of a principle of respect (...) for autonomy. Hence, its use appears promising to narrow the theory–practice gap. (shrink)

Over the past two decades, the promotion of collaborative partnerships involving researchers from low and middle income countries with those from high income countries has been a major development in global health research. Ideally, these partnerships would lead to more equitable collaboration including the sharing of research responsibilities and rewards. While collaborative partnership initiatives have shown promise and attracted growing interest, there has been little scholarly debate regarding the fair distribution of authorship credit within these partnerships.

Health professionals are involved in humanitarian assistance and development work in many regions of the world. They participate in primary health care, immunization campaigns, clinic- and hospital-based care, rehabilitation and feeding programs. In the course of this work, clinicians are frequently exposed to complex ethical issues. This paper examines how health workers experience ethics in the course of humanitarian assistance and development work. A qualitative study was conducted to consider this question. Five core themes emerged from the data, including: tension (...) between respecting local customs and imposing values; obstacles to providing adequate care; differing understandings of health and illness; questions of identity for health workers; and issues of trust and distrust. Recommendations are made for organizational strategies that could help aid agencies support and equip their staff as they respond to ethical issues. (shrink)

New mechanisms to ensure that counter ter ror ism ac t ivit ies do not contravene international law or ethical values and principles will require careful design. Apart from the ethical and legal grounds, there are good practical rea-sons to design more effective counterter-rorism measures. Preventable harms to population health contribute to mistrust and instability and undermine the stated objectives of the intelligence services.

Disaster research has grown in scope and frequency. Research in the wake of disasters and during humanitarian crises – particularly in resource-poor settings – is likely to raise profound and unique ethical challenges for local communities, crisis responders, researchers, and research ethics committees. Given the ethical challenges, many have questioned how best to provide research ethics review and oversight. We contribute to the conversation concerning how best to ensure appropriate ethical oversight in disaster research and argue that ethical disaster research (...) requires of researchers and RECs a particular sort of ongoing, critical engagement which may not be warranted in less exceptional research. We present two cases that typify the concerns disaster researchers and RECs may confront, and elaborate upon what this ongoing engagement might look like – how it might be conceptualized and utilized – using the concept of real-time responsiveness. The central aim of RTR, understood here as both an ethical ideal and practice, is to lessen the potential for research conducted in the wake of disasters to create, perpetuate, or exacerbate vulnerabilities and contribute to injustices suffered by disaster-affected populations. Well cultivated and deployed, we believe that RTR may enhance the moral capacities of researchers and REC members, and RECs as institutions where moral agency is nurtured and sustained. (shrink)

Humanitarian healthcare work presents a range of ethical challenges for expatriate healthcare professionals, including tragic choices requiring the selection of a least-worst option. In this paper we examine a particular set of tragic choices related to the prioritization of care and allocation of scarce resources between individuals in situations of widespread and urgent health needs. Drawing on qualitative interviews with clinicians, we examine the nature of these choices. We offer recommendations to clinical teams and aid organizations for preparing and supporting (...) frontline clinicians in their efforts to determine the least-worst option, and in their responsibility for making such choices. (shrink)

Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations (...) relating to participation and partnership arising in the action-research. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Humanitarian healthcare work presents a range of ethical challenges for expatriate healthcare professionals, including tragic choices requiring the selection of a least-worst option. In this paper we examine a particular set of tragic choices related to the prioritization of care and allocation of scarce resources between individuals in situations of widespread and urgent health needs. Drawing on qualitative interviews with clinicians, we examine the nature of these choices. We offer recommendations to clinical teams and aid organizations for preparing and supporting (...) frontline clinicians in their efforts to determine the least-worst option, and in their responsibility for making such choices. (shrink)

The current humanitarian use of drones is focused on two applications: disaster mapping and medical supply delivery. In response to the growing interest in drone deployment in the aid sector, we sought to develop a resource to support value sensitivity in humanitarian drone activities. Following a bottom-up approach encompassing a comprehensive literature review, two empirical studies, a review of guidance documents, and consultations with experts, this work illuminates the nature and scope of ethical challenges encountered by humanitarian organizations embarking upon (...) innovation programmes. The Framework for the Ethics Assessment of Humanitarian Drones (FEAHD) identifies five values and five key questions related to ethical considerations along the decision chain of humanitarian drone activities. It fills a gap between high-level, principle-based guidance related to humanitarian innovation, and detailed operation-oriented checklists for projects involving the use of drones. In this way, the FEAHD contributes to support value sensitivity in the humanitarian use of drones. (shrink)

The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. We aim to answer the following questions: 1) what do research ethics committee members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries perceive as the (...) key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants’ vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster setting over and above those typically encountered in global health research to achieve meaningful community engagement. Disaster research presents distinctive ethical considerations that require attention to ensure that participants are protected. As RECs review disaster research protocols, they should address these concerns and consider how justification, vulnerability, security and confidentially, and community engagement are shaped by the realities of conducting research in a disaster. (shrink)

The current humanitarian use of drones is focused on two applications: disaster mapping and medical supply delivery. In response to the growing interest in drone deployment in the aid sector, we sought to develop a resource to support value sensitivity in humanitarian drone activities. Following a bottom-up approach encompassing a comprehensive literature review, two empirical studies, a review of guidance documents, and consultations with experts, this work illuminates the nature and scope of ethical challenges encountered by humanitarian organizations embarking upon (...) innovation programmes. The Framework for the Ethics Assessment of Humanitarian Drones (FEAHD) identifies five values and five key questions related to ethical considerations along the decision chain of humanitarian drone activities. It fills a gap between high-level, principle-based guidance related to humanitarian innovation, and detailed operation-oriented checklists for projects involving the use of drones. In this way, the FEAHD contributes to support value sensitivity in the humanitarian use of drones. (shrink)

The humanitarian sector continually faces organizational and operational challenges to respond to the needs of populations affected by war, disaster, displacement, and health emergencies. With the goal of improving the effectiveness and efficiency of response efforts, humanitarian innovation initiatives seek to develop, test, and scale a variety of novel and adapted practices, products, and systems. The innovation process raises important ethical considerations, such as appropriately engaging crisis-affected populations in defining problems and identifying potential solutions, mitigating risks, ensuring accountability, sharing benefits (...) fairly, and managing expectations. This paper aims to contribute to knowledge and practice regarding humanitarian innovation ethics and presents two components related to a value-sensitive approach to humanitarian innovation. First is a mapping of how ethical concepts are mobilized in values statements that have been produced by a diverse set of organizations involved in humanitarian innovation. Analyzing these documents, we identified six primary values (do-no-harm, autonomy, justice, accountability, sustainability, and inclusivity) around which we grouped 12 secondary values and 10 associated concepts. Second are two proposed activities that teams engaged in humanitarian innovation can employ to foreground values as they develop and refine their project’s design, and to anticipate and plan for challenges in enacting these values across the phases of their project. A deliberate and tangible approach to engaging with values within humanitarian innovation design can help to ground humanitarian innovation in ethical commitments by increasing shared understanding amongst team members, promoting attentiveness to values across the stages of innovation, and fostering capacities to anticipate and respond to ethically challenging situations. (shrink)

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral (...) dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships. (shrink)

Background: Autonomy is a central concept in both bioethics and rehabilitation. Bioethics has emphasized autonomy as self-governance and its application in treatment decision-making. In addition to discussing decisional autonomy, rehabilitation also focuses on autonomy as functional independence. In practice, responding to patients with diminished autonomy is an important component of rehabilitation care, but also gives rise to tensions and challenges. Our objective was to better understand the complex and distinctive ways that autonomy is understood and upheld in the context of (...) rehabilitation care by reviewing how autonomy is discussed in the rehabilitation literature. Methods: We conducted a scoping review addressing issues of autonomy in the context of mental and physical rehabilitation. Our process followed three sequential steps. We extracted and analyzed bibliometric information. We then examined how autonomy was defined and conceptualized. Finally, we examined how the articles discussed the roles of rehabilitation health professionals in responding to patient autonomy. Findings: The articles include 16 empirical reports, 17 case studies and 30 theoretical papers. The most common conceptual accounts of autonomy drew upon principlism, rights-based and legal analyses, and relational/social approaches. We identified four broad approaches for responding to patient autonomy: supporting, promoting, respecting and advocating. Conclusion: This review helps clarify some of the ambiguities and conceptual distinctions underlying discussions and practices related to autonomy in rehabilitation. It also draws attention to a wide range of activities that health professionals can undertake with the goal of supporting, promoting, respecting and advocating for patient autonomy in rehabilitation care. (shrink)

Background: Autonomy is a central concept in both bioethics and rehabilitation. Bioethics has emphasized autonomy as self-governance and its application in treatment decision-making. In addition to discussing decisional autonomy, rehabilitation also focuses on autonomy as functional independence. In practice, responding to patients with diminished autonomy is an important component of rehabilitation care, but also gives rise to tensions and challenges. Our objective was to better understand the complex and distinctive ways that autonomy is understood and upheld in the context of (...) rehabilitation care by reviewing how autonomy is discussed in the rehabilitation literature. Methods: We conducted a scoping review addressing issues of autonomy in the context of mental and physical rehabilitation. Our process followed three sequential steps. We extracted and analyzed bibliometric information. We then examined how autonomy was defined and conceptualized. Finally, we examined how the articles discussed the roles of rehabilitation health professionals in responding to patient autonomy. Findings: The articles include 16 empirical reports, 17 case studies and 30 theoretical papers. The most common conceptual accounts of autonomy drew upon principlism, rights-based and legal analyses, and relational/social approaches. We identified four broad approaches for responding to patient autonomy: supporting, promoting, respecting and advocating. Conclusion: This review helps clarify some of the ambiguities and conceptual distinctions underlying discussions and practices related to autonomy in rehabilitation. It also draws attention to a wide range of activities that health professionals can undertake with the goal of supporting, promoting, respecting and advocating for patient autonomy in rehabilitation care. (shrink)

The intersection of national security, foreign policy, and health has been explored in a number of arenas, but little attention has been devoted to the ethical issues surrounding the global health impact of current counterterrorism policy and practice. In this essay, we’ll review a range of harms to population health traceable to counterterrorism operations, identify concerns involving moral agency and responsibility—specifically of humanitarian health workers, military medical personnel, and national security officials and operatives—and highlight two interrelated policy issues: the need (...) for a conception of national security that incorporates a cosmopolitan concern for health, and the need for shared health governance, including governance of activities affecting health. (shrink)

Canadian health professionals are involved in humanitarian assistance and development work in many regions of the world. They participate in primary health care, immunization campaigns, feeding programs, rehabilitation and hospital-based care. In the course of their work clinicians are frequently exposed to complex ethical issues. This thesis examines how health workers experience ethics in the course of humanitarian assistance and development work. A qualitative study was conducted to consider this question. Five core themes emerged from the data including experiencing a (...) tension between respecting local customs and imposing values, knowing how to respond when basic care is impossible, addressing differing understandings of health and illness, questions of identity for health workers, and issues of trust and distrust. Recommendations are made for standards and organizational strategies that could help aid agencies better support and equip their staff as they respond to ethical issues. (shrink)

The use of drones (or unmanned aerial vehicles, UVAs) in humanitarian action has emerged rapidly in the last decade and continues to expand. These so-called ‘humanitarian drones’ represent the first wave of robotics applied in the humanitarian and development contexts, providing critical information through mapping of crisis-affected areas and timely delivery of aid supplies to populations in need. Alongside these emergent uses of drones in the aid sector, debates have arisen about potential risks and challenges, presenting diverse perspectives on the (...) ethical, legal, and social implications of humanitarian drones. Guided by the methodology introduced by Arksey and O’Malley, this scoping review offers an assessment of the ethical considerations discussed in the academic and gray literature based on a screening of 1,188 articles, from which we selected and analyzed 47 articles. In particular, we used a hybrid approach of qualitative content analysis, along with quantitative landscape mapping, to inductively develop a typology of ethical considerations associated with humanitarian drones. The results yielded 11 key areas of concern: (1) minimizing harm, (2) maximizing welfare, (3) substantive justice, (4) procedural justice, (5) respect for individuals, (6) respect for communities, (7) regulatory gaps, (8) regulatory dysfunction, (9) perceptions of humanitarian aid and organizations, (10) relations between humanitarian organizations and industry, and (11) the identity of humanitarian aid providers and organizations. Our findings illuminate topics that have been the focus of extensive attention (such as minimizing risks of harm and protecting privacy), traces the evolution of this discussion over time (i.e., an initial focus on mapping drones and the distinction of humanitarian from military use, toward the ethics of cargo drones carrying healthcare supplies and samples), and points to areas that have received less consideration (e.g., whether sustainability and shared benefits will be compromised if private companies’ interest in humanitarian drones wanes once new markets open up). The review can thus help to situate and guide further analysis of drone use in humanitarian settings. (shrink)

Managing non-communicable diseases in crisis-affected and fragile humanitarian contexts requires special attention because primary health care systems often collapse or become compromised in such settings. As a result, addressing and managing these diseases become more challenging. Humanitarian organizations that intervene in crisis situations are increasingly including NCD management in the services they support and provide; however, they encounter a range of issues such as ensuring the quality of care, sustainability of programs, and the possibility of unintended harms. This case study (...) explores ethical considerations raised by a mobile NCD program run by an international humanitarian organization in a country affected by a protracted civil war. (shrink)

It is clear that in the eyes of a growing number of humanitarian fieldworkers and decision-makers, palliative care is something humanitarian organizations should strive to provide as they address the needs of populations affected by crises. What remains less clear are the moral justifications underlying the push to do so. This chapter dives beneath surface prescriptions of what “ought to be” the place of palliative care within humanitarian response. It presents and analyses a series of evocative statements made by 24 (...) humanitarian healthcare actors about why, on what bases, and with what caveats, care for the dying deserves more attention within humanitarian healthcare response. Embedded in these statements are sometimes explicit, sometimes implicit ideas about what it means be a human and a humanitarian, and what humans need and deserve. Clarifying the experiences, practical considerations, understandings of care and responsibility, and norms and values underlying these feelings renders these available for more thorough reflection, discussion, and debate. (shrink)

Patient-Centered Care and Cultural Practices: Process and Criteria for Evaluating Adaptations of Norms and Standards in Health Care Institutions Content Type Journal Article Pages 327-339 DOI 10.1007/s10730-009-9115-8 Authors Matthew R. Hunt, McMaster University Department of Clinical Epidemiology and Biostatistics Montreal Canada Journal HEC Forum Online ISSN 1572-8498 Print ISSN 0956-2737 Journal Volume Volume 21 Journal Issue Volume 21, Number 4.

Many health care professionals (HCPs) are understandably reluctant to treat patients in environments infested with bedbugs, in part due to the risk of themselves becoming bedbug vectors to their own homes and workplaces. However, bedbugs are increasingly widespread in care settings, such as nursing homes, as well as in private homes visited by HCPs, leading to increased questions of how health care organizations and their staff ought to respond. This situation is associated with a range of ethical considerations including the (...) duty of care, stigmatization, vulnerability, confidentiality, risks for third parties, and professional autonomy. In this article, we analyze these issues using a case study approach. We consider how patients whose living environments are infested with bedbugs can receive care in the community setting in a manner that supports their well-being, is consistent with fairness in care provision, and takes into account risks for HCPs and third parties. We also discuss limits and obstacles to the provision of care in these situations. (shrink)