Ambient assisted living technologies can provide assistance and support to persons with dementia. They might allow them the possibility of living at home for longer whilst maintaining their comfort and security as well as offering a way towards reducing the huge economic and personal costs forecast as the incidence of dementia increases worldwide over coming decades. However, the development, introduction and use of AAL technologies also trigger serious ethical issues. This paper is a systematic literature review of the on-going scholarly (...) debate about these issues. More specifically, we look at the ethical issues involved in research and development, clinical experimentation, and clinical application of AAL technologies for people with dementia and related stakeholders. In the discussion we focus on: the value of the goals of AAL technologies, the special vulnerability of persons with dementia in their private homes, the complex question of informed consent for the usage of AAL technologies. (shrink)

Research ethics is an integral part of research, especially that involving human subjects. However, concerns have been expressed that research ethics has come to be seen as a procedural concern focused on a few well-established ethical issues that researchers need to address to obtain ethical approval to begin their research. While such prospective review of research is important, we argue that it is not sufficient to address all aspects of research ethics. We propose retrospective review as an important complement to (...) prospective review. We offer two arguments to support our claim that prospective review is insufficient. First, as currently practiced, research ethics has become for some a ‘tick box’ exercise to get over the ‘hurdle’ of ethics approval. This fails to capture much of what is important in ethics and does not promote careful reflection on the ethical issues involved. Second, the current approach tends to be rules-based and we argue that research ethics should go beyond this to develop people’s capacity to be sensitive to the relevant moral features of their research, their ethical decision-making skills and their integrity. Retrospective review of a project’s ethical issues, and how they were addressed, could help to achieve those aims better. We believe that a broad range of stakeholders should be involved in such retrospective review, including representatives of ethics committees, participating communities and those involved in the research. All stakeholders could then learn from others’ perspectives and experiences. An open and transparent assessment of research could help to promote trust and understanding between stakeholders, as well as identifying areas of agreement and disagreement and how these can be built upon or addressed. Retrospective review also has the potential to promote critical reflection on ethics and help to develop ethical sensitivity and integrity within the research team. Demonstrating this would take empirical evidence and we suggest that any such initiatives should be accompanied by research into their effectiveness. Our article concludes with a discussion of some possible objections to our proposal, and an invitation to further debate and discussion. (shrink)

Conducting research during or in the aftermath of disasters poses many specific practical and ethical challenges. This is particularly the case with research involving human subjects. The extraordinary circumstances of research conducted in disaster settings require appropriate regulations to ensure the protection of human participants. The goal of this study is to systematically and qualitatively review the existing ethical guidelines for disaster research by using the constant comparative method. We performed a systematic qualitative review of disaster research ethics guidelines to (...) collect and compare existing regulations. Guidelines were identified by a three-tiered search strategy: 1) searching databases, 2) an Internet search, and 3) a search of the references in the included documents from the first two searches. We used the constant comparative method for analysis of included guidelines. Fourteen full text guidelines were included for analysis. The included guidelines covered the period 2000-2014. Qualitative analysis of the included guidelines revealed two core themes: vulnerability and research ethics committee review. Within each of the two core themes, various categories and subcategories were identified. Some concepts and terms identified in analyzed guidelines are used in an inconsistent manner and applied in different contexts. Conceptual clarity is needed in this area as well as empirical evidence to support the statements and requirements included in analyzed guidelines. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

Moral theory has generally focused on resolving ethical dilemmas by identifying ethically sound options. Whether the focus is on consequences, duties, principles or virtues, ethical cases are often approached in ways that assume morally sound solutions can be found and followed. Such ‘ideal morality’ assumes that moral goodness is always possible, leaving people confident they have done the right thing. Such an approach becomes inadequate in disaster settings where any good solution is often difficult to see. This paper examines recent (...) work on nonideal moral theory as a useful model for disaster bioethics. This approach views moral dilemmas as situations where no choice is ideal and every option involves some element of unavoidable wrongdoing. Rather than straining for ideal answers, this approach acknowledges that sometimes the lesser of two evils is the best that can be done. Such situations inevitably lead to feelings of regret or guilt, commonly encountered in discussions of disaster bioethics. This paper explores the practical implications of nonideal approaches for disaster responders working in tragic situations. (shrink)

This Open Access Book is the first to examine disasters from a multidisciplinary perspective. Justification of actions in the face of disasters requires recourse both to conceptual analysis and ethical traditions. Part 1 of the book contains chapters on how disasters are conceptualized in different academic disciplines relevant to disasters. Part 2 has chapters on how ethical issues that arise in relation to disasters can be addressed from a number of fundamental normative approaches in moral and political philosophy. This book (...) sets the stage for more focused normative debates given that no one book can be completely comprehensive. Providing analysis of core concepts, and with real-world relevance, this book should be of interest to disaster scholars and researchers, those working in ethics and political philosophy, as well as policy makers, humanitarian actors and intergovernmental organizations.. (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)

Background Nurses experienced intense ethical and moral challenges during the COVID-19 pandemic. Our 2020 qualitative parent study of frontline nurses’ experiences during the COVID-19 pandemic identified ethics as a cross-cutting theme with six subthemes: moral dilemmas, moral uncertainty, moral distress, moral injury, moral outrage, and moral courage. We re-analyzed ethics-related findings in light of refined definitions of ethics concepts. Research aim To analyze frontline U.S. nurses’ experiences of ethics during the COVID-19 pandemic. Research design Qualitative analysis using a directed content (...) methodology. Participants and research context The study included 43 nurses from three major metropolitan academic medical centers and one community hospital in the northeastern, mid-Atlantic, midwestern, and western United States. Ethical considerations Participant privacy and data confidentiality were addressed. Findings Moral dilemmas arose from many situations, most frequently related to balancing safety and patient care. Moral uncertainty commonly arose from lacking health information or evidence about options. Moral distress occurred when nurses knew the right thing to do, but were prevented from doing so, including with end-of-life issues. Moral injury (accompanied by suffering, shame, or guilt) occurred after doing, seeing, or experiencing wrongdoing, often involving authority figures. Nurses expressed moral outrage at events and people within and outside healthcare. Despite difficult ethical situations, some nurses exemplified moral courage, sometimes by resisting policies they perceived as preventing compassionate care, guided by thinking about what was best for patients. Discussion This content analysis of ethics-related subthemes revealed conceptual characteristics and clarified distinctions with corresponding exemplars. Conceptual clarity may inform responses and interventions to address ethical quandaries in nursing practice. Conclusions Ethics education in nursing must address the moral dilemmas of pandemics, disasters, and other crises. Nurses need time and resources to heal from trying to provide the best care when no ideal option was available. (shrink)

A connection has long been made between music and moral education. Recent discussions have focused on concerns that certain lyrics can lead to acceptance of violence, suicide, inappropriate views of women, and other unethical behaviour. Debate over whether such connections exist at least illustrates that popular songs engage listeners with ethical issues; this arises from the unique blend of emotional and cognitive reactions to music. And while the emotional side of ethics has received less attention than other aspects of ethics, (...) it is important and music can be a powerful and unique tool to introduce the emotional aspects of ethics. Music appeals to almost everyone. Throughout history songs have rallied people to action and drawn people into deeper reflection. Music engages our emotions, our imagination and our intellect. Students already spend many hours listening to songs, some of which address ethical issues; it is thus an ideal pedagogic aid in teaching subjects like ethics. This article will discuss how carefully selected songs can encourage thoughtful reflection and critical thinking about ethical issues: a number of specific examples will be described, along with a discussion of the general practicalities of using popular songs in teaching ethics and a demonstration of how students learn to listen critically and actively reflect on the ethical messages they receive. The enjoyment of music helps to engage students with ethics and its relevance for their lives and careers. This article aims to share some of the excitement and enthusiasm that popular songs have brought to my teaching of ethics. (shrink)

Disasters and public health emergencies raise a variety of ethical dilemmas, often including those that require balancing the best interests of individuals against those of groups or communities. The on-going COVID-19 pandemic provides examples of these ethical conflicts, as do other recent outbreaks. Decisions and actions in this context must address different ethical issues, ranging from those directly related to autonomy, consent, privacy and confidentiality to those related to interventions and technologies, such as efficacy, effectiveness, safety and fair access. This (...) paper aims to identify ethical conflicts with complex resolutions involving aspects related to values, rights and needs of individuals and the collective, and to suggest how such challenges could lead to more positive experiences and outcomes when confronted in future emergencies. (shrink)