Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

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)

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)

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)

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)

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)

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)

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 aim of this study is to understand how governance mechanisms in cross-sector collaborations (CSCs) for sustainability affect value creation and capture and subsequently the survival of this organizational form. Drawing on a longitudinal, participatory, single-case study of collaborative action in the textile industry, we identify three governance mechanisms—safeguarding, bundling and connecting—that coevolve with the rising and waning of collaborative tensions and the shifting levels of action in the CSC we studied. These mechanisms aided value creation and helped facilitate private (...) value capture. We integrate these insights into a process model that visualizes the interplay between governance mechanisms of tensions and systems of value creation and capture in CSCs for sustainability. Our study contributes to the cross-sector collaboration literature by providing a dynamic and nuanced understanding of how governance mechanisms influence outcomes in CSCs for sustainability. We also add to the business model for sustainability literature by theorizing the value creation and capture system of collaborative rather than individual organizations. Our findings have important implications for policymakers who fund collaborative organizations and practitioners who manage or participate in them. (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)

Ethical dilemmas are part of medicine, but the type of challenges, the frequency of their occurrence and the nuances in the difficulties have not been systematically studied in low-income settings. The objective of this paper was to map out the ethical dilemmas from the perspective of Ethiopian physicians working in public hospitals. A national survey of physicians from 49 public hospitals using stratified, multi-stage sampling was conducted in six of the 11 regions in Ethiopia. Descriptive statistics were used and the (...) responses to the open-ended question “If you have experienced any ethical dilemma, can you please describe a dilemma you have encountered in your own words?” were analyzed using a template analysis process. A total of 587 physicians responded, and 565 met the inclusion criteria. Twelve of 24 specified ethically challenging situations were reported to be experienced often or sometimes by more than 50% of the physicians. The most frequently reported challenge concerned resource distribution: 93% agreed that they often or sometimes had to make difficult choices due to resource limitation, and 83% often or sometimes encountered difficulties because patients were unable to pay for the preferred course of treatment. Other frequently reported difficulties were doubts about doing good or harming the patient, relating to conflicting views, concern for family welfare, disclosure issues and caring for patients not able to consent. Few reported dilemmas related to end-of-life issues. The 200 responses to the open-ended question mirrored the quantitative results. Ethiopian physicians report ethical challenges related more to bedside rationing and fairness concerns than futility discussions and conflicts about autonomy as described in studies from high-income countries. In addition to the high report of experienced challenges, gravity of the dilemmas that are present in their narratives are striking. Recognition of the everyday experiences of physicians in low-income settings should prompt the development of ethics teaching and support mechanisms, discussion of ethical guidelines as well as increase our focus on how to improve the grave resource scarcity they describe. (shrink)

Using touch as a medium for exploring the ways in which it is constructed by nurses, the body is here characterized by a plethora of competing and co‐existing terms: disobedient, obedient, mirroring, stigmatized, sinful, post‐mortem, sanitized, angelic, desexualized, dangerous, dominant, dominating, deceitful, submissive, disciplined, postmodern and communicative. We have tried to be provocative by juxtaposing contradictory messages and evoking conflicting emotions, and we hope that the reader will not assume that we believe everything we write, or that everything may be (...) taken only at face value. There are as many messages and meanings in the paper as each reader thinks there are. (shrink)

Academics and practitioners: nurses as intellectuals In the author's experience, nurse educators working in universities generally accept that they are ‘academics’, but dismiss suggestions that they are ‘intellectuals’ because they see it as a pretentious description referring to a small number of academics and aesthetes who inhabit a conceptual world beyond the imaginative capacity of most other people. This paper suggests that the concept of the ‘intellectual’, if not the word itself, be admitted into nursing discourse through the adoption of (...) a non‐élitist Gramscian understanding, similar to the more recently formulated conception of the reflective practitioner. According to the Italian Marxist scholar Antonio Gramsci, intellectuals are those people who develop ways in which to construct the conditions of their own existence, a possibility he believed was open to all. It is suggested that, from a Gramscian perspective, all nurses are intellectuals to varying degrees, and nurse educators should not only be nurturing their own intellectualism but also the potential for intellectualism as it exists within each individual. The ways in which this project are related to Habermasian critical theory are also briefly outlined. (shrink)

This chapter contains sections titled: Bioethics Genethics Medical Ethics.

The purpose of this study was to compare working memory (WM), executive function, academic ability and problem classroom behaviors in children aged 8 to 11 years who were either identified via routine screening as having low WM, or had been diagnosed with ADHD. Standardised assessments of WM, executive function and reading and mathematics were administered to 83 children with ADHD, 50 children with low WM and 50 typically developing children. Teachers rated problem behaviors on checklists measuring attention, hyperactivity/impulsivity, oppositional behavior, (...) and difficulties associated with executive function in the classroom. The ADHD and low WM groups had highly similar WM and executive function profiles, but were distinguished in two key respects: children with ADHD had higher levels of rated and observed impulsive behavior, and children low WM had slower response times. Possible mechanisms for these common and distinct deficits are discussed. (shrink)

Although the concept of psychopathy retains its currency in British psychiatry, apparently being meaningful as well as useful to practitioners (1), it is often taken to refer to a purely legal category with social control functions rather than a medical diagnosis with treatment implications. I wish, in this brief article, to suggest that it is essentially, and most usefully, an ethical category which stands outside the diagnostic framework of present-day psychiatry.

Continuing medico-technical progress has led toan increasing medicalisation of pregnancy andchildbirth. One of the most common technologiesin this context is ultrasound. Based on someidentified `pro-technology feminist theories',notably the postmodernist feminist discourse,the technology of ultrasound is analysedfocusing mainly on social and political ratherthan clinical issues. As empirical researchsuggests, ultrasound is welcomed by themajority of women. The analysis, however, showsthat attitudes and decisions of women areinfluenced by broader social aspects. Furthermore, it demonstrates how the visualtechnology of ultrasound, in addition to otherreproductive technology (...) in maternity care, islinked to the `personification' of the foetusand has therefore contributed to a new image ofthe foetus. The exploration of these issueschallenges some arguments of feministdiscourse. It draws attention to possibleadverse implications of the technology forwomen's reproductive freedom and indicates theimportance of the topic for politicaldiscussions. (shrink)

This commentary focuses upon the ‘fetishism of persons’ in Marx which Balibar claims both mirrors and animates the better-known fetishism of things. Revisiting the chapter on exchange in which Balibar grounds his thesis, the essay attends to the theatrical metaphors by which Marx presents legal personhood as a pantomime of commodity fetishism. The essay demonstrates how the movable immobility of the commodity comes to life in its inverse, the mobile and immovable figure of the legal person; it then claims that (...) this inversion positions legal persons as animate props for property. But if legal persons, the essay asks, merely personify economic relations, by what means are they sufficiently distanced from commodities to be able to become their reflex and puppet? In other words, what vestibule keeps personal liberty’s analogy with economic relations from collapsing into identity? A significant historical answer, the essay asserts, is transatlantic chattel slavery—not only because this institution is both ideological foil to, and material basis for, liberal capital, but also because the slave herself, as animate property, undoes the distinction between persons and commodities. The essay concludes by insisting upon the significance of this neglected figure in philosophies of the transindividual, while also taking first steps toward a transindividual analysis of slavery. (shrink)

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)

Human embryos produced in labs since the 1970s have generated layers of uncertainty for law and policy: ontological, moral, and administrative. Ontologically, these lab-made entities fall into a gray zone between life and not-yet-life. Should in vitro embryos be treated as inanimate matter, like abandoned postsurgical tissue, or as private property? Morally, should they exist largely outside of state control in the zone of free reproductive choice or should they be regarded as autonomous human lives and thus entitled to constitutional (...) protection like full-fledged citizens? Administratively, if they deserve protection, what institutional and policy mechanisms are best suited to carrying out the necessary oversight? Using a method termed comparative problematization, this article traces divergent answers to these questions produced in three countries—the United States, United Kingdom, and Germany—across the last twenty-five years. Comparison reveals distinct bioconstitutional foundations that give rise to systematically different understandings of each state’s responsibilities toward human life and hence its particular treatment of claims on behalf of embryonic lives. (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)