Traditionally, discussions of moral participation – and in particular moral agency – have focused on fully formed human actors. There has been some interest in the development of morality in humans, as well as interest in cultural differences when it comes to moral practices, commitments, and actions. However, until relatively recently, there has been little focus on the possibility that nonhuman animals have any role to play in morality, save being the objects of moral concern. Moreover, when nonhuman cases are (...) considered as evidence of moral agency or subjecthood, there has been an anthropocentric tendency to focus on those behaviors that inform our attributions of moral agency to humans. For example, some argue that the ability to evaluate the principles upon which a moral norm is grounded is required for full moral agency. Certainly, if a moral agent must understand what makes an action right or wrong, then most nonhuman animals would not qualify (and perhaps some humans too). However, if we are to understand the evolution of moral psychology and moral practice, we need to turn our attention to the foundations of full moral agency. We must first pay attention to the more broadly normative practices of other animals. Here, we begin that project by considering evidence that great apes and cetaceans participate in normative practices. (shrink)

Background: International developments suggest that providing clinical ethics services to help clinicians negotiate ethical issues that arise in clinical practice is beneficial and reflects best practice in promoting high ethical standards and patient-centered care. The aim of this study was to explore the needs and experiences of clinical staff members to inform the development of future clinical ethics support. Methods: Health professionals at a large regional health service completed an online survey containing questions about the frequency of ethical and legal (...) issues encountered in clinical practice, the type of situations that gave rise to the ethical and/or legal uncertainty or concern, how clinicians currently address these issues, and what support would be welcome. Results: The survey was completed by 369 staff members, including 61% with more than 10 years in the profession and 51% in nursing/midwifery. Two-thirds (66%) indicated they often considered ethical implications of their clinical decisions, and half (49%) often considered the legal implications. More than half (58%) were often/occasionally concerned about the ethically right thing to do. Patient requests for borderline treatment (47%), staff disagreements about patient care (48%), and patients declining recommended treatment (54%) were the most frequent reasons given for ethical or legal uncertainty. Sixty-nine percent of respondents indicated that the way their department addressed ethical issues could be improved and 85% agreed that there is a need for more discussion on ethical issues. The majority (82%) of respondents had encountered ethically challenging clinical situations where additional support would have helped. Common approaches to issues were discussion with colleagues/supervisor (91.1%), discussion at handover/group forums (50.8%), and consultation with guidelines/protocols (60.9%). Conclusions: A majority of clinical staff members surveyed have encountered ethically/legally challenging cases daily for which they have often sought additional advice. This study indicates that many clinical staff members would welcome some form of additional clinical ethics support including advice and education. (shrink)

The application of machine learning in health care holds great promise for improving care. Indeed, our own team is collaborating with experts in machine learning and statistical modeling to bu...

Academic integrity has become a significant point of concern in the post-secondary landscape, and many institutions are now exploring ways on how to implement academic integrity training for students. This paper delineates the development of an Academic Integrity E-Learning (AIE-L) tutorial at MacEwan University, Canada. In its first incarnation, the AIE-L tutorial was intended as an education tool for students who had been found to violate the University’s Academic Integrity Policy. However, in a discourse of the academic integrity process, the (...) University reimagined it from only emphasising the increased understanding and strengthened commitment of students found to have committed academic misconduct to a proactive focus with education for all students. The purpose of the present paper is three-fold: first, describe the development of the AIE-L tutorial as an experiential case study; second, improve the content of the AIE-L tutorial through students’ quantitative and qualitative feedback; third, calibrate the pre and post-test questions for content validity for a forthcoming large-scale measurement of the AIE-L tutorial effectiveness. (shrink)

Frameworks for responsible data stewardship, such as that proposed by McCoy et al. (2023), are intended to encourage and provide guidelines for data processors to engage in responsible data process...

Scholars and professional organizations in bioethics describe various approaches to “quality assessment” in clinical ethics. Although much of this work represents significant contributions to the literature, it is not clear that there is a robust and shared understanding of what constitutes “quality” in clinical ethics, what activities should be measured when tracking clinical ethics work, and what metrics should be used when measuring those activities. Further, even the most robust quality assessment efforts to date are idiosyncratic, in that they represent (...) evaluation of single activities or domains of clinical ethics activities, or a range of activities at a single hospital or healthcare system. Countering this trend, in this article we propose a framework for moving beyond our current ways of understanding clinical ethics quality, toward comprehensive quality assessment. We first describe a way to conceptualize quality assessment as a process of measuring disparate, isolated work activities; then, we describe quality assessment in terms of tracking interconnected work activities holistically, across different levels of assessment. We conclude by inviting future efforts in quality improvement to adopt a comprehensive approach to quality assessment into their improvement practices, and offer recommendations for how the field might move in this direction. (shrink)

Social norms – rules governing which behaviours are deemed appropriate or inappropriate within a given community – are typically taken to be uniquely human. Recently, this position has been challenged by a number of philosophers, cognitive scientists, and ethologists, who have suggested that social norms may also be found in certain non-human animal communities. Such claims have elicited considerable scepticism from norm cognition researchers, who doubt that any non-human animals possess the psychological capacities necessary for normative cognition. However, there is (...) little agreement among these researchers about what these psychological prerequisites are. This makes empirical study of animal social norms difficult, since it is not clear what we are looking for and thus what should count as behavioural evidence for the presence (or absence) of social norms in animals. To break this impasse, we offer an approach that moves beyond contested psychological criteria for social norms. This approach is inspired by the animal culture research program, which has made a similar shift away from heavily psychological definitions of ‘culture’ and to become organized around a cluster of more empirically tractable concepts of culture. Here, we propose an analogous set of constructs built around the core notion of a normative regularity, which we define as a socially maintained pattern of behavioural conformity within a community. We suggest methods for studying potential normative regularities in wild and captive primates. We also discuss the broader scientific and philosophical implications of this research program with respect to questions of human uniqueness, animal welfare and conservation. (shrink)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

Driven by interests in workforce planning and patient safety, a growing body of literature has begun to identify the reality and the prevalence of missed nursing care, also specified as care left undone, rationed care or unfinished care. Empirical studies and conceptual considerations have focused on structural issues such as staffing, as well as on outcome issues – missed care/unfinished care. Philosophical and ethical aspects of unfinished care are largely unexplored. Thus, while internationally studies highlight instances of covert rationing/missed care/care (...) left undone – suggesting that nurses, in certain contexts, are actively engaged in rationing care – in terms of the nursing and nursing ethics literature, there appears to be a dearth of explicit decision-making frameworks within which to consider rationing of nursing care. In reality, the assumption of policy makers and health service managers is that nurses will continue to provide full care – despite reducing staffing levels and increased patient turnover, dependency and complexity of care. Often, it would appear that rationing/missed care/nursing care left undone is a direct response to overwhelming demands on the nursing resource in specific contexts. A discussion of resource allocation and rationing in nursing therefore seems timely. The aim of this discussion paper is to consider the ethical dimension of issues of resource allocation and rationing as they relate to nursing care and the distribution of the nursing resource. (shrink)

Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased (...) tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. (shrink)

Derk Pereboom's Four-Case Argument is among the most famous and resilient manipulation arguments against compatibilism. I contend that its resilience is not a function of the argument's soundness but, rather, the ill-gotten gain from an ambiguity in the description of the causal relations found in the argument's foundational case. I expose this crucial ambiguity and suggest that a dilemma faces anyone hoping to resolve it. After a thorough search for an interpretation which avoids both horns of this dilemma, I conclude (...) that none is available. Rather, every metaphysically coherent interpretation invites either a hard- or soft-line reply to Pereboom's argument. I then consider a recharacterization of the dilemma which seems to clear the way for the defence of a revised Four-Case Argument. I address this rejoinder by identifying a still more fundamental problem shared by all viable interpretations of the manipulation cases, showing that each involves a type of manipulation which undermines the victim's agency. Because this diagnosis supports a soft-line reply to every viable interpretation of the argument and can be endorsed by any compatibilist, I consider it the final piece of the Soft-line Solution to the Four-Case Argument. Finally, I suggest a new taxonomy of manipulation arguments, arguing that none that employs the suppressive variety of manipulation found in Pereboom's argument offers a threat to compatibilism. -/- (For direct download option, search Kristin M. Mickelson, Soft-line Solution). (shrink)

The proliferation of multistakeholder initiatives (MSIs) over the past years has sparked an intense debate on the political role of corporations in the governance of global business conduct. To gain a better understanding of corporate political behavior in multistakeholder governance, this article investigates how firms construct a political identity when participating in MSIs. Based on an in-depth case study of the Accord on Fire and Building Safety in Bangladesh—an MSI established after the collapse of the Rana Plaza garment factory complex (...) in 2013 to improve working conditions in the Bangladeshi garment industry—we introduce the construct of a political CSR (corporate social responsibility) identity (PCSRI) and explore how firms construct their PCSRIs in MSIs. Employing a qualitative, inductive theory-building method, we analyze interviews and archival data to develop a framework that elucidates how companies construct their PCSRIs within a continuum ranging from conservative to progressive. We show that constructing a PCSRI involves enacting specific, yet interrelated, political strategies that are themselves shaped by several forces over time. This article contributes to the literature by providing a political perspective on organizational identity construction that extends the emerging integrative perspective in political corporate social responsibility (PCSR) research. We suggest that MSIs should be conceptualized as inherently political governance mechanisms that are driven by multidirectional and dynamic political processes of identity construction. Our study shows that corporate political engagement in MSIs is a more nuanced and complex phenomenon than presently theorized. (shrink)

BackgroundThe global interest in developing therapies for Ebola infection management and its prevention is laudable. However the plan to conduct an emergency immunization program specifically for healthcare workers using experimental vaccines raises some ethical concerns. This paper shares perspectives on these concerns and suggests how some of them may best be addressed.DiscussionThe recruitment of healthcare workers for Ebola vaccine research has challenges. It could result in coercion of initially dissenting healthcare workers to assist in the management of EVD infected persons (...) due to mistaken beliefs that the vaccine offers protection. It could also affect equity and justice. For example, where people who are not skilled health care professionals but who provide care to patients infected with Ebola are not prioritized for vaccination. The possibility of study participants contracting Ebola infection despite the use of experimental vaccine, and the standard of care they would receive, needs to be addressed clearly, transparently and formalized as part of the ethics review process. Future access to study products in view of current status of the TRIPS agreement needs to be addressed. Finally, broad stakeholder engagement at local, regional and international levels needs to be promoted using available communication channels to engage local, regional and international support. These same concerns are applicable for current and future epidemics.SummarySuccessful Ebola vaccine development research requires concerted efforts at public dialogue to address misconceptions, equity and justice in participant selection, and honest discussions about risks, benefits and future access. Public dialogue about Ebola vaccine research plans is crucial and should be conducted by trusted locals and negotiated between communities, researchers and ethics committees in research study sites. (shrink)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

This collection of essays provides a reassessment of the question of sexual difference, taking into account important shifts in feminist thought, post-humanist theories, and queer studies. The contributors offer new and refreshing insights into the complex question of sexual difference from a post-feminist perspective, and how it is reformulated in various related areas of study, such as ontology, epistemology, metaphysics, biology, technology, and mass-media.

The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

Daniel Bell and Wang Pei’s recent monograph, Just Hierarchy, seeks to defend hierarchical relationships against more egalitarian alternatives. This paper addresses their argument, offered in one chapter of the book, in favour of a hierarchical relationship between human and nonhuman animals. This relationship, Bell and Pei argue, should conform to what they call “subordination without cruelty:” it is permissible to subordinate and exploit animals for human ends, provided that we do not treat them cruelly. We focus on three aspects of (...) their view: their argument for a hierarchical view; their understanding of cruelty; and their account of the heightened duties they claim we owe to nonhuman animals who are intelligent, domesticated, and/or “cute.” We argue that the reasons that Bell and Pei offer fail to support their conclusions, and that, even if one accepts a hierarchical view, the conclusions that Bell and Pei draw about the permissibility of practices such as killing animals for food do not follow. We conclude by emphasizing philosophers’ responsibility to thoroughly test their arguments and to engage with existing debates, especially when the practices they seek to justify involve harms of great magnitude. (shrink)

Major disasters and public health emergencies constantly test the nation's resolve to rally and recover from tragedy. Public health crises stemming from prolonged threats like the 2009/2010 H1N1 influenza pandemic require sustained preparedness and response over many months. Even shorter-duration events, like tornados, earthquakes, or hurricanes, leave lasting impacts for which full recovery may take years. Telling examples include the displacement of thousands of persons across the Gulf Coast states following Hurricane Katrina in 2005 and difficulties obtaining basic housing and (...) services that persisted in the Northeast months after Hurricane Sandy in 2012. Whether the result of natural disasters, infectious disease outbreaks, bioterrorism, or other causes, these events can change the societal landscape in affected regions.Despite the challenges of recovery across populations stemming from national or regional emergencies, Americans have consistently supported those directly affected. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:Configured to Christ: On Spiritual Direction and Clergy Formation by James KeatingChristian Raab O.S.B.Configured to Christ: On Spiritual Direction and Clergy Formation by James Keating (Steubenville, OH: Emmaus Road, 2021), xxix + 312 pp.Deacon James Keating has served the Church by forming her clergy for thirty years. While he has been a seminary professor and a director of deacon formation at the diocesan level, his prolific scholarship as (...) well as his time as director of theological formation for the Institute for Priestly Formation in Creighton, NE, made him a national figure. Configured to Christ is a collection of Keating's most important essays.While this book is a retrospective, it couldn't be more timely. In 2016 (on the Feast of the Immaculate Conception, December 8), the Congregation for Catholic Education issued The Gift of the Priestly Vocation—Ratio Fundamentalis Institutionis Sacerdotalis, a text which provides guidelines for the whole Church concerning priestly formation. In the fall of 2021, the United States Council of Catholic Bishops completed their revision of the sixth edition of the Program of Priestly Formation (PPF), which translates the principles of the Ratio for the American context. With these two documents in place, it now falls upon seminaries to examine their programs in light of the vision provided by the magisterium. The next five to ten years promise to be a time of reform and renewal in seminary formation. Institutions will be looking for fresh and orienting ideas. Keating's book can be recommended as among the best resources for the venture that awaits.One reason Keating's book is so valuable is its focus on the "perichoresis" of the various aspects of formation (107). This emphasis is consonant with the terminological change found in the new PPF from the language of formational "pillars" to the language of formational "dimensions" (see the USCCB's 5th edition of the PPF, §28). The thinking behind this change seems to have been that it was too easy to imagine "pillars" as separate from [End Page 1110] one another. The human, spiritual, intellectual, and pastoral dimensions of formation are in fact interwoven, interdependent, and interpenetrating. While they can be distinguished, they cannot be divided. Growth in one fosters growth in the other. Keating has long understood this, as his various essays show.The book is divided into three parts and eighteen chapters. Part 1 is entitled "The Interior Life of the Cleric." Here, readers are introduced to the integral relationship between the spiritual and intellectual formational dimensions. For example, Keating provides, in chapter 1, a sustained theoretical reflection on the relationship between academic theology and spirituality, and, in chapter 2, he examines John Henry Newman's writings as a concretized test case for the right relationship of prayer, study, and thought. Authors such as Hans Urs von Balthasar and Jean Leclercq have investigated this relationship in classic works, but Keating's presentation is notable for its accessibility, coherence, and concision. The remaining chapters of part 1 address the topics of silence and spiritual direction. Emerging from these analyses are the insights that interiority expands through discovery of Christ within. We participate in Christ as we behold, wonder, think, theologize, and pray. Keating's plea that we introduce ministerial candidates to the romance of silence is most welcome.The second part of the book is entitled "The Formation of the Cleric." It brings together nine essays which explicitly explore the art of formation. The key to this section, and maybe to the whole book, is chapter 7, "Christ is the Sure Foundation: Priestly Human Formation Completed in and by Spiritual Formation." This chapter makes the case not only for the perichoresis of formational dimensions but also for a much stronger emphasis on spiritual formation than is often the case. Of special note is Keating's observation that spiritual formation can truly support human formation. This is an important insight. In his 1992 apostolic exhortation Pastores Dabo Vobis (on the formation of priests), John Paul II had articulated that human formation was "the basis of all priestly formation" (§43).Unfortunately, this line could be (and has been) interpreted problematically to mean human formation... (shrink)

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews (...) with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations. (shrink)

BackgroundDeep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies hav...

The research question addressed in this paper is: How do the activities of writing mediate knowledge of writing, disciplinary knowledge, and professional knowledge as intertwined sites of learning? To conceptualise the role that writing can take in these complex processes, we apply an analytical framework comprising two core concepts; mediation and learning trajectories. We draw on an empirical study from the context of initial teacher education in Norway. From our analysis, we identify three qualities of writing as important. First, the (...) writing process should in- clude responding to and sharing drafts. Other important qualities include high teacher expectations and continuous reflection. From the perspective adopted here, learning is understood to be distributed and situated. In particular, in situated cultural contexts, collaborative writing can become a significant mediational tool for learning. Initial teacher education seeks to prepare the student teacher for a highly complex professional competency, developing both professionally and in individual subjects. To do so, students must transform social structures and the tools embedded in practices into psychological tools. We contend that writing is one significant tool in moving through complex trajectories of learning towards becoming professional teachers. (shrink)

While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled “case-finding” or “detection of cognitive impairment”. Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how the definitions (...) and delimitations of the concepts (the _what_ of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the _how_ of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished. (shrink)

The paper analyses issues related to supervision and support of early career researchers in Estonian academia. We use nine focus groups interviews conducted in 2015 with representatives of social sciences in order to identify early career researchers’ needs with respect to support, frustrations they may experience, and resources they may have for addressing them. Our crucial contribution is the identification of wider support networks of peers and colleagues that may compensate, partially or even fully, for failures of official supervision. On (...) the basis of our analysis we argue that support for early career researchers should take into account the resources they already possess but also recognise the importance of wider academic culture, including funding and employment patterns, and the roles of supervisors and senior researchers in ensuring successful functioning of support networks. Through analysing the conditions for the development of early career researchers – producers of knowledge – our paper contributes to social epistemology understood as analysis of specific forms of social organisation of knowledge production. (shrink)

Major disasters and public health emergencies constantly test the nation's resolve to rally and recover from tragedy. Public health crises stemming from prolonged threats like the 2009/2010 H1N1 influenza pandemic require sustained preparedness and response over many months. Even shorter-duration events, like tornados, earthquakes, or hurricanes, leave lasting impacts for which full recovery may take years. Telling examples include the displacement of thousands of persons across the Gulf Coast states following Hurricane Katrina in 2005 and difficulties obtaining basic housing and (...) services that persisted in the Northeast months after Hurricane Sandy in 2012. Whether the result of natural disasters, infectious disease outbreaks, bioterrorism, or other causes, these events can change the societal landscape in affected regions.Despite the challenges of recovery across populations stemming from national or regional emergencies, Americans have consistently supported those directly affected. (shrink)

Research Ethics, Volume 18, Issue 1, Page 64-83, January 2022. Automated, wearable cameras can benefit health-related research by capturing accurate and objective information about individuals’ daily experiences. However, wearable cameras present unique privacy- and confidentiality-related risks due to the possibility of the images capturing identifying or sensitive information from participants and third parties. Although best practice guidelines for ethical research with wearable cameras have been published, limited information exists on the risks of studies using wearable cameras. The aim of this (...) literature review was to survey risks related to using wearable cameras, and precautions taken to reduce those risks, as reported in empirical research. Forty-five publications, comprising 36 independent studies, were reviewed, and findings revealed that participants’ primary concerns with using wearable cameras included physical inconvenience and discomfort in certain situations. None of the studies reviewed reported any serious adverse events. Although it is possible that reported findings do not include all risks experienced by participants in research with wearable cameras, our findings suggest a low level of risk to participants. However, it is important that investigators adopt recommended precautions, which can promote autonomy and reduce risks, including participant discomfort. (shrink)

Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of lifeworld are (...) presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed. (shrink)

Health equity can be defined as the absence of disadvantage to individuals and communities in health outcomes, access to health care, and quality of health care regardless of one’s race, gender, nationality, age, ethnicity, religion, and socioeconomic status. Health equity concerns those disparities in public health that can be traced to unequal, systemic economic, and social conditions. Despite significant improvements in the health of the overall population, health inequities in America persist. Racial and ethnic minorities continue to experience higher rates (...) of morbidity and mortality than non-minorities across a range of health issues. For example, African-American children with asthma have a seven times greater mortality rate than Non-Hispanic white children with the illness. While cancer is the second leading cause of death among all populations in the U.S., ethnic minorities are especially burdened with the disease. (shrink)