A significant portion of newborns cared for in the neonatal intensive care unit or other ICUs, such as the cardiac ICU, have a medical condition with a genetic component, including congenital malformations, the leading cause of death in the NICU. In many cases, however, it is not clear which condition the child has or what can be done to help him or her. Genomic sequencing of sick newborns has the potential to bypass the prolonged journey to a diagnosis, improving the (...) medical care of individual infants. Sequencing also has the potential to benefit others beyond the child whose genome is sequenced and his or her immediate family. Sequence data from sick newborns will expand medicine's understanding of genetic diseases, leading to improvements in clinicians’ ability to counsel family and to provide even more targeted care. Not only will more frequent use of sequencing lead to discovery of new genes; it will also provide unique insights into the full spectrum of known Mendelian genetic diseases, so‐called phenotypic expansion, when a gene previously recognized as associated with a phenotype is found to be associated with an expanded set of clinical features. Genetic and environmental changes that modify the expression of a genetic disease may also be elucidated. (shrink)

Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants’ locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frameworks for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant’s real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by (...) a National Institute of Mental Health grant. Building on established guidelines and the emerging norm of returning results in participant-centered research, we present a novel framework specific to the ethical, legal, and social implications of returning IRRs in digital phenotyping research. Our framework offers researchers, clinicians, and Institutional Review Boards (IRBs) urgently needed guidance, and the principles developed here in the context of psychiatry will be readily adaptable to other therapeutic areas. (shrink)

Mitochondrial donation poses the latest regulatory challenge for policy-makers in the context of assisted conception. Since 2010 the Human Genetics Commission, the Human Fertilisation and Embryology Authority and the Nuffield Council on Bioethics have all considered the policy implications of permitting use of these techniques in treatment. The Nuffield Council on Bioethics reported its recommendations in June 2012 following a consultation on the ethical issues raised by these techniques; and a separate consultation by the Human Fertilisation and Embryology Authority in (...) conjunction with Sciencewise-ERC followed in September 2012. Matters for consideration included the potential relationships created by the use of three parties’ genetic material and the associated ramifications, eg whether or not there is a need to establish records of such donations and, if so, to whom should information later be provided? Thus, mitochondrial donation poses both novel and familiar questions about the ‘genetic family’, ‘parentage’ and ‘identity’. This article explores some of the ways in which mitochondrial DNA is constructed as relatively significant in recent Parliamentary debates, policy and consultation documents. It reflects on the ways in which the role of some genetic connections, or lack thereof, are mediated in law and policy. (shrink)

It now seems technically feasible to culture human embryos beyond the “fourteen‐day limit,” which has the potential to increase scientific understanding of human development and perhaps improve infertility treatments. The fourteen‐day limit was adopted as a compromise but subsequently has been considered an ethical line. Does it remain relevant in light of technological advances permitting embryo maturation beyond it? Should it be changed and, if so, how and why? What justifications would be necessary to expand the limit, particularly given that (...) doing so would violate some people's moral commitments regarding human embryos? Robust stakeholder engagement preceded adoption of the fourteen‐day limit and should arguably be part of efforts to reassess it. Such engagement could also consider the need for enhanced oversight of human embryo research. In the meantime, developing and implementing reliable oversight systems should help foster high‐quality research and public confidence in it. (shrink)

It now seems technically feasible to culture human embryos beyond the “fourteen‐day limit,” which has the potential to increase scientific understanding of human development and perhaps improve infertility treatments. The fourteen‐day limit was adopted as a compromise but subsequently has been considered an ethical line. Does it remain relevant in light of technological advances permitting embryo maturation beyond it? Should it be changed and, if so, how and why? What justifications would be necessary to expand the limit, particularly given that (...) doing so would violate some people's moral commitments regarding human embryos? Robust stakeholder engagement preceded adoption of the fourteen‐day limit and should arguably be part of efforts to reassess it. Such engagement could also consider the need for enhanced oversight of human embryo research. In the meantime, developing and implementing reliable oversight systems should help foster high‐quality research and public confidence in it. (shrink)

As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses (...) the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered. (shrink)

A deep investigation of proprioceptive processes is necessary to understand the relationship between sensory afferent inputs and motor outcomes. In this work, we investigate whether and how perception of wrist position is influenced by the direction along which the movement occurs. Most previous studies have tested Joint Position Sense through 1 degree of freedom wrist movements, such as flexion/extension or radial/ulnar deviation. However, the wrist joint has 3-DoF and many activities of daily living produce combined movements, requiring at least 2-DoF (...) wrist coordination. For this reason, in this study, target positions involved movement directions that combined wrist flexion or extension with radial or ulnar deviation. The chosen task was a robot-aided Joint Position Matching, in which blindfolded participants actively reproduced a previously passively assumed target joint configuration. The JPM performance of 20 healthy participants was quantified through measures of accuracy and precision, in terms of both perceived target direction and distance along each direction of movement. Twelve different directions of movement were selected and both hands tested. The left and right hand led to comparable results, both target extents and directions were differently perceived according to the target direction on the FE/RUD space. Moreover, during 2-DoF combined movements, subjects’ perception of directions was impaired when compared to 1-DoF target movements. In summary, our results showed that human perception of wrist position on the FE/RUD space is symmetric between hands but not isotropic among movement directions. (shrink)

Recovery is a model of care in (forensic) mental health settings across Western nations that aims to move past the paternalistic and punitive models of institutional care of the 20th century and toward more patient‐centered approaches. But as we argue in this paper, the recovery‐oriented services that evolved out of the early stages of this liberating movement signaled a shift in nursing practices that cannot be viewed only as improvements. In effect, as “recovery” nursing practices became more established, more codified, (...) and more institutional(ized), a stasis developed. Recovery had been reterritorialized. The purpose of this paper is to examine some of the threads of recovery, from its early days of antipsychiatry activism to its codification into mental health—including forensic mental health—institutions through the lens of poststructuralist philosophers Gilles Deleuze and Felix Guattari. We believe that Deleuze and Guattari's scholarship provides the necessary, albeit uncomfortable, framework for this critical examination. From a conceptualization of recovery as an assemblage, we critically examine how we can go about creating something new, caught in a tension between stasis and change. (shrink)

Nurses working in forensic psychiatric settings face unique challenges in practice, where they take on a dual role of custody and caring. Patient resistance is widespread within these restrictive settings and can take many forms. Perhaps the most disturbing form of resistance entails a patient's weaponization of their bodily fluids, with nurses as their target. The tendency in assigning motive for this act is to relegate to the psychopathology of the patient. This paper will adopt a poststructuralist perspective to reexamine (...) this phenomenon as an act of resistance through the lens of Kristeva's concept of abjection. Patients confined in these settings have little sense of control, and in resistance may resort to the only thing available: their bodily fluids. By weaponizing the abject, patients actively violate and permeate the physical and psychological boundaries of nurses—the very boundaries considered crucial to safe and professional forensic psychiatric nursing practice. By recognizing this phenomenon as an act of resistance to confinement and loss of control, nurses may reorient their approach to care in forensic psychiatric settings. (shrink)

Nurses working in correctional and forensic mental health settings face unique challenges in the provision of care to patients within custodial settings. The subjectivities of both patients and nurses are subject to the power relations, discourses and abjection encountered within these practice milieus. Using a poststructuralist approach using the work of Foucault, Kristeva, and Deleuze and Guattari, this paper explores how both patient and nurse subjectivities are produced within the carceral logic of this apparatus of capture. Recognizing that subjectivities are (...) fluid and dynamic, and capable of change, Deleuze and Guattari's concept of deterritorialization will illustrate opportunities for resistance, where nurses can begin to practice outside the dominant carceral logic (and restrictions) of the system. (shrink)

Three experiments investigated response times for remember and know responses in recognition memory. RTs to remember responses were faster than RTs to know responses, regardless of whether the remember–know decision was preceded by an old/new decision or was made without a preceding old/new decision . The finding of faster RTs for R responses was also found when remember–know decisions were made retrospectively. These findings are inconsistent with dual-process models of recognition memory, which predict that recollection is slower and more effortful (...) than familiarity. Word frequency did not influence RTs, but remember responses were faster for words than for nonwords. We argue that the difference in RTs to remember and know responses reflects the time taken to make old/new decisions on the basis of the type of information activated at test. (shrink)

In this paper, we argue that nurses need to be aware of how the production of space in specific contexts – including health care systems and research institutions – perpetuates marginalized populations' state of social otherness. Lefebvre's idea regarding spatial triad is mobilized in this paper, as it pertains to two‐spirited, lesbian, gay, bisexual, trans and queer populations (2SLGBTQ*). We believe that nurses can create counter‐spaces within health care systems and research institutions that challenge normative discourses. Lefebvre's work provides us (...) the necessary tools to understand how various places or environments produce identities. In understanding Lefebvre's principles, we believe that nurses can play an essential role in creating counter‐spaces, thereby instigating counter‐institutional practices, for those who experience otherness. (shrink)

Violations of ethical conductThis article is about torture, power and the breach of ethical conduct among military doctors, nurses and medics in the “War on Terror”. Violations of ethical conduct have been widely recounted in academic and non-academic journals and reports.1 This paper is also a call to international boards of doctors and nurses to intervene directly to stop abuses undertaken by US military healthcare providers under the guise of the War on Terror. With evidence growing that US military and (...) security services are actively engaged in the ill treatment, torture and deaths of suspects, details about the participation of healthcare professionals in such unlawful and unethical activities remain for the most part timidly accounted for. But according to current literature on this topic, there is increasing evidence that US doctors, nurses and medics have been complicit in torture and other unethical activities in Afghanistan, Iraq and Guantanamo Bay .2–4The US government has inadequately dealt with these facts. Senior officials in the Bush administration who have played a major part in conducting the War on Terror have been either promoted or asked to remain in their posts. More seriously, despite worldwide condemnation of the reality behind the photos, allegations of torture continue at Guantanamo Bay, Cuba.5 The graphic and appalling nature of several photographs are by no means the only evidence of abuses conducted by the US on its own territory and abroad. But the complicity of healthcare professionals in many venues , such as in capital punishment procedures in the US, exacerbates the already disturbing extent of bio-political abuses by the US government.Doctors and nurses often top the polls as caring and trustworthy professionals.6 Indeed, so strong …. (shrink)

The inner ache: an experiential perspective on IonelinessThis paper examines the various theoretical approaches that have informed both the conceptualizations and the research approaches to investigations of loneliness. A focus on phenomenological and existential perspectives of loneliness can assist in an understanding of what is essentially a subjective distressing experience. The elderly, particularly those residing in nursing homes, are vulnerable to feelings of existential loneliness because following busy lives, often they are left without meaningful roles. Concomitant to this sense of (...) loss of meaning is an alteration in the perception of lived time. It is the purpose of this paper to stimulate research into what is a common but profoundly distressing experience. (shrink)

A student's future as a knowledge worker (one who "thinks for a living" with the task of problem solving) is the starting point of this book. With this in mind, the book combines a review of philosophical positions and problems with practical examples and perspectives gained from everyday challenges faced by knowledge workers in their businesses and organizations. Through the use of summative chapters, highlighted key concepts, questions for reflection, and illustrative examples on how to work with the theories presented, (...) the book provides a clear and accessible introduction to this challenging subject. Philosophy of Science primarily addresses students studying language, communication, marketing, economics, and management. However, the survey of the theoretical schools of thought - as well as the discussions on research ethics and the role of research in society - will be equally relevant for other students in the humanities and the natural and social sciences. (shrink)

Background:The global COVID-19 pandemic has imposed challenges on healthcare systems and professionals worldwide and introduced a ´maelstrom´ of ethical dilemmas. How ethically demanding situations are handled affects employees’ moral stress and job satisfaction.Aim:Describe priority-setting dilemmas, moral distress and support experienced by nurses and physicians across medical specialties in the early phase of the COVID-19 pandemic in Western Norway.Research design:A cross-sectional hospital-based survey was conducted from 23 April to 11 May 2020.Ethical considerations:Ethical approval granted by the Regional Research Ethics Committee in (...) Western Norway (131421).Findings:Among the 1606 respondents, 67% had experienced priority-setting dilemmas the previous two weeks. Healthcare workers who were directly involved in COVID-19 care, were redeployed or worked in psychiatry/addiction medicine experienced it more often. Although 59% of the respondents had seen adverse consequences due to resource scarcity, severe consequences were rare. Moral distress levels were generally low (2.9 on a 0–10 scale), but higher in selected groups (redeployed, managers and working in psychiatry/addiction medicine). Backing from existing collegial and managerial structures and routines, such as discussions with colleagues and receiving updates and information from managers that listened and acted upon feedback, were found more helpful than external support mechanisms. Priority-setting guidelines were also helpful.Discussion:By including all medical specialties, nurses and physicians, and various institutions, the study provides information on how the COVID-19 mitigation also influenced those not directly involved in the COVID-19 treatment of patients. In the next stages of the pandemic response, support for healthcare professionals directly involved in outbreak-affected patients, those redeployed or those most impacted by mitigation strategies must be a priority.Conclusion:Empirical research of healthcare workers experiences under a pandemic are important to identify groups at risks and useful support mechanisms. (shrink)

Involuntary autobiographical memories are typically discussed in the context of negative memories such as trauma ‘flashbacks’. However, IAMs occur frequently in everyday life and are predominantly positive. In spite of this, surprisingly little is known about how such positive IAMs arise. The trauma film paradigm is often used to generate negative IAMs. Recently an equivalent positive film was developed inducing positive IAMs . The current study is the first to investigate which variables would best predict the frequency of positive IAMs. (...) Higher levels of positive mood change to the film were significantly associated with the number of positive IAMs recorded in the subsequent week. Results demonstrate the importance of positive emotional reaction at the time of an event for subsequent positive IAMs. (shrink)

This chapter contains sections titled: Bioethics Genethics Medical Ethics.

In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such a goal; structural constraints; and (...) nurses’ ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses’ everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care. (shrink)

During the past decade, screening tests using computed tomography have disseminated into practice and been marketed to patients despite neither conclusive evidence nor professional agreement about their efficacy and cost-effectiveness at the population level. This phenomenon raises questions about physicians' professional roles and responsibilities within the setting of medical innovation, as well as the appropriate scope of patient autonomy and access to unproven screening technology. This article explores how physicians ought to respond when new screening examinations that lack conclusive evidence (...) of overall population benefit emerge in the marketplace and are requested by individual patients. To this end, the article considers the nature of evidence and how it influences decision-making for screening at both the public policy and individual patient levels. We distinguish medical and ethical differences between screening recommended for a population and screening considered on an individual patient basis. Finally, we discuss specific cases to explore how evidence, patient risk factors and preferences, and physician judgment ought to balance when making individual patient screening decisions. (shrink)

This new study provides a thorough analysis of the ethical reasoning of doctors and nurses. Based on extensive interviews, Soren Holm's work demonstrates how qualitative research methods can be used to study ethical reasoning, and that the results of such studies are important for normative ethics, that is, the analysis of how health care professionals ought to act.

Human beings have a tendency to transform geographical spaces into dwelling places which assume significance in terms of their social, cultural and personal identities. The authors describe the ways in which this occurs, how it is disrupted by a natural disaster - an Australian bushfire - and how the reciprocal relationship between place and person can contribute to personal and communal healing. The discussion draws on a doctoral thesis conducted by the principal author, and is illuminated by excerpts from narratives (...) provided by those who experienced the bushfire. The discussion is informed by insights from phenomenological geography and ecological philosophy. (shrink)

The question that this paper tries to answer is Q: “Can good academic bioethics be done without commitment to moral theory?” It is argued that the answer to Q is an unequivocal “Yes” for most of what we could call “critical bioethics,” that is, the kind of bioethics work that primarily criticizes positions or arguments already in the literature or put forward by policymakers. The answer is also “Yes” for much of empirical bioethics. The second part of the paper then (...) provides an analysis of Q in relation to “constructive bioethics,” that is, bioethics work aimed at providing an argument for a particular position. In this part, it is argued that a number of the approaches or methods used that initially look like they involve no commitment to moral theory, nevertheless, involve such a commitment. This is shown to be the case for reflective equilibrium, mid-level theory, the use of theory fragments, and argument by analogy. (shrink)

The aim of this study was to obtain an increased understanding of the experiences of elderly people in geriatric care, with special reference to integrity. Data were collected through qualitative interviews with elderly people and, in order to obtain a description of caregivers’ integrity-promoting or non-promoting behaviours, participant observations and qualitative interviews with nursing students were undertaken. Earlier studies on the integrity of elderly people mainly concentrated on their personal and territorial space, so Kihlgren and Thorsén opened up the possibility (...) of considering the concept of integrity from a broader view by recognizing its relationship to the larger framework of the self-concept. Based on this, findings in the present study indicate that elderly people’s integrity relating to their corporal self were the least violated. On the other hand, their psycological, information and cultural selves were the most exposed. The study also identified a further dimension (i.e. one relating to social self), which should be included in the concept of integrity because respecting elderly people’s social self reduces their feelings of loneliness, isolation and seclusion. In summary, the results indicate that the concept of integrity is complex and has several dimensions. (shrink)

This article analyses the general ethical milieu in a nursing home for elderly residents and provides a decision-making model for analysing the ethical situations that arise. It considers what it means for the residents to live together and for the staff to be in ethically problematic situations when caring for residents. An interpretative phenomenological approach and Sandman’s ethical model proved useful for this purpose. Systematic observations were carried out and interpretation of the general ethical milieu was summarized as ‘being in (...) the same world without meeting’. Two themes and four subthemes emerged from the analysis. Three different ethical problems were analysed. The outcome of using the decision-making model highlighted the discrepancy between the solutions used and well-founded solutions to these problems. An important conclusion that emerged from this study was the need for a structured tool for reflection. (shrink)

En quoi le corps participe-t-il de l'entente que l'homme a du monde? Que signifie dès lors écouter? Comment établir un rapport juste à l'animal? Quel sens prêter aux couleurs? Pourquoi la tonalité décisive de notre rapport au monde peut-elle advenir à la faveur d'expériences olfactives et gustatives? En quoi la tactilité incite-t-elle à considérer le corps vif comme une donnée originaire et à reconnaître qu'il est bien une vulnérabilité dotée d'aptitudes qui nous dispose au monde? Comment l'angoisse, révélée et cachée (...) tout à la fois par la maladie, est-elle chevillée au corps de l'être-au-monde, le Dasein? Qu'en est-il du corps dans la nostalgie, dans la mélancolie, dans l'ennui et dans la joie? Pourquoi la coexistence, supposant relations et rencontres, implique-t-elle l'articulation des corporéités vives comme dans le tact sensitif ou dans la jalousie amoureuse et dans l'amour pensé en terme de tonalité érotique? Comment comprendre la mobilité et parvenir ainsi jusqu'à l'éminente dignité ontologique du mouvement? De quoi la pensée est-elle redevable au corps? Telles sont les questions qui jalonnent cet ouvrage. Par son orientation résolument phénoménologique, l'Intelligence du corps entend renouveler l'entente du phénomène le plus proprement humain et, cependant, le plus malmené par la métaphysique. Prenant librement appui sur les vues inouïes de Martin Heidegger, consciente de l'actuelle soumission du corps de l'homme à l'arraisonnement technique, Ingrid Auriol ouvre une voie d'accès à l'intelligence du corps libérée de cette violence. (shrink)

A IDENTIFICAÇÃO DO DIREITO AMBIENTAL MARÍTIMO.

A IMPORTÂNCIA DE TRATAMENTO DE ÁGUAS RESIDUAIS ATRAVÉS DA BIORREMEDIAÇÃO: UMA ANÁLISE PRINCIPIOLÓGICA.

This article reveals a 91-year-old cognitively intact man’s lived experiences of being cared for in a geriatric context in which the majority of the patients were cognitively impaired. A narrative patient story was analysed phenomenologically. The findings indicate that this patient’s basic needs for ethical care were not met. The staff did not see him as a unique individual with his own preferences, resources and abilities to master his life. In order to survive this lack of ethical care, he played (...) the role of an ‘old cognitively impaired man’, which provided him with at least the understanding and attention the cognitively impaired patients received from the staff. The findings also indicate that ethical care is independent of whether or not older cognitively intact and impaired patients stay or live in the same unit, but it is more dependent on a caregiver’s ability to respect and confirm each and every patient for who he or she is and would like to be. (shrink)