Because no single person or group holds knowledge about all aspects of research, mechanisms are needed to support knowledge exchange and engagement. Expertise in the research setting necessarily includes scientific and methodological expertise, but also expertise gained through the experience of participating in research and/or being a recipient of research outcomes. Engagement is, by its nature, reciprocal and relational: the process of engaging research participants, patients, citizens and others brings them closer to the research but also brings the research closer (...) to them. When translating research into practice, engaging the public and other stakeholders is explicitly intended to make the outcomes of translation relevant to its constituency of users. In practice, engagement faces numerous challenges and is often time-consuming, expensive and ‘thorny’ work. We explore the epistemic and ontological considerations and implications of four common critiques of engagement methodologies that contest: representativeness, communication and articulation, impacts and outcome, and democracy. The ECOUTER methodology addresses problems of representation and epistemic foundationalism using a methodology that asks, “How could it be otherwise?” ECOUTER affords the possibility of engagement where spatial and temporal constraints are present, relying on saturation as a method of ‘keeping open’ the possible considerations that might emerge and including reflexive use of qualitative analytic methods. This paper describes the ECOUTER process, focusing on one worked example and detailing lessons learned from four other pilots. ECOUTER uses mind-mapping techniques to ‘open up’ engagement, iteratively and organically. ECOUTER aims to balance the breadth, accessibility and user-determination of the scope of engagement. An ECOUTER exercise comprises four stages: engagement and knowledge exchange; analysis of mindmap contributions; development of a conceptual schema ; and feedback, refinement and development of recommendations. ECOUTER refuses fixed truths but also refuses a fixed nature. Its promise lies in its flexibility, adaptability and openness. ECOUTER will be formed and re-formed by the needs and creativity of those who use it. (shrink)

BackgroundEngagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an (...) ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study.MethodsParticipants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique.ResultsParticipants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study.ConclusionThe experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies. (shrink)

Stuart Murray's 'Care and the self: biotechnology, reproduction, and the good life' utilizes Foucault's "care of the self" to examine health domains in its title. The present author discusses three important articulations of concern with the Foucauldian concepts of care of the self that are absent in the work of Murray and others: first, the voluntarism and individualism inherent in ideas about care of the self; second, the absence of the interactional and relational; and, third, the perpetuation of the interpretation (...) of Foucault's concept of governmentality, 'the conduct of conduct', as primarily coercive. (shrink)

The economic aspects of biobanking are intertwined with the social and scientific aspects. We describe two problems that structure the discussion about the economics of biobanking and which illustrate this intertwining. First, there is a ‘sustainability problem’ about how to maintain biobanks in the long term. Second, and representing a partial response to the first problem, there is a ‘commercialisation problem’ about how to deal with the voluntary altruistic relationship between participants and biobanks, and the potential commercial relationships that a (...) biobank may form. Social scientists have argued that the commercialisation problem is inadequate as a way to construct the multiple tensions that biobanks must negotiate. We agree that the commercialisation problem is an inadequate framework; turning to alternative accounts of bioeconomy, we suggest that contemporary consideration of the economics of biobanking primarily in terms of participants and their bodily tissue may reproduce the very commodification of science that these scholars critique. We suggest that an alternative conception of the economics of biobanking beyond the logics of commodification, which may thereby allow broader questions about the social and economic conditions and consequences of biobanks to be posed. (shrink)

In this paper the current legislative landscape and the challenges researchers face in obtaining informed consent in acute situations are explored. In such situations, some current guidelines can be difficult or impossible to apply. Capacity should be formally assessed before consent is sought to ensure that vulnerable persons are neither inappropriately recruited to a study nor denied the opportunity to participate. However, there is little guidance in current legislation as to how this should be achieved. When the patient is considered (...) to be unable to provide prospective informed consent, other forms are sometimes permissible, although all have specific drawbacks. First, it is argued that a brief instrument, suitable for the acute situation, is needed to determine whether patients have the capacity to consent to clinical trials. Secondly, it is argued that there are areas of the informed consent process that require review, and ways that improvements could be made are suggested. (shrink)

In emergency research, obtaining informed consent can be problematic. Research to develop and improve treatments for patients admitted to hospital with life-threatening and debilitating conditions is much needed yet the issue of research without consent (RWC) raises concerns about unethical practices and the loss of individual autonomy. Consistent with the policy and practice turn towards greater patient and public involvement in health care decisions, in the US, Canada and EU, guidelines and legislation implemented to protect patients and facilitate acute research (...) with adults who are unable to give consent have been developed with little involvement of the lay public. This paper reviews research examining public opinion regarding RWC for research in emergency situations, and whether the rules and regulations permitting research of this kind are in accordance with the views of those who ultimately may be the most affected. (shrink)

This paper extends previous attempts at understanding the nature of organizational integrity and its increasingly important role for companies which, after all, bear a moral and societal responsibility. Interpretations of organizational integrity in business ethics literature incorporate aspects ranging from the behavior of managers and employees to corporate structures and incentive systems. We argue that virtue ethics builds an indispensable framework for understanding the origin of the concept of integrity and transfer these findings to an organizational level. Hence, we first (...) define organizational integrity, and second operationalize it in a closed three-step process, consisting of morally sound corporate commitments, their transparent institutionalization within the company, and their implementation into actions. We consider the main goal of organizational integrity to be of a preventative investment nature. Organizational integrity is a company investment that translates into avoiding fines for potential violations of the law or ethical missteps, as well as an investment in the company’s reputation. In turn, organizational integrity can protect a company from disruptions that can threaten its existence. Defining and operationalizing the concept of organizational integrity provides the foundation for future scientific research and the basis for developing practical guidance for organizations and managers. (shrink)

Organizational integrity is a key concept with and through which a company can assume its responsibility for ethical and societal issues. It is a basic premise for sustainable corporate success, as ethical risks ultimately become economic risks for a company. Recent research shows the potential of integrity‐based governance models to reduce corporate risks and to improve business performance. However, companies are not yet able to assess nor evaluate their level of organizational integrity in a sound and systematic way. We aim (...) to develop a theoretical model as a basis for the measurement of organizational integrity by conceptualizing the construct and sizing the theoretical model's scope. We suggest that the theoretical model follows a holistic approach and involves three types of dimensions: prerequisite dimensions, independent dimensions, and dependent dimensions. The organizational integrity triad—consisting of active commitments to self‐imposed norms and principles, their transparent institutionalization into corporate processes and structures, and their implementation into action—plays a key role in this context. (shrink)

Some health leaders and researchers have launched mass prevention programs without sound biomedical groundwork. They have oversold the benefits of prevention and underestimated the secondary effects. Some have forced nonmedical concerns into the medical model. Others have blurred the distinctions between prevention and other measures such as screening or therapy. Some have transferred responsibility for disease to the victim. A few have imputed magical powers to certain symbols of prevention, in order to create an illusion of control.

Creation and evolution were historic allies against eternalism. However, Darwinism seemed to undercut cosmological theism and human dignity, and modern reconcilers of evolution and theology have not convinced opponents that they can preserve these concerns. Creationists find divine handiwork in natural order and freedom in human uniqueness. For them, even entropy and continuity of kinds are emblematic of the unity of nature and the needfulness of salvation. Anti‐evolutionists’ impatience and frustration are not well answered by dogmatic or mythicized science. Neither (...) is creation well served by reduction to merely empiric facts. Because creationism and evolutionism rest on the unabstractable categories of contingency and necessity, neither will disappear. (shrink)

In “Bloody Mary,” a statue of the Virgin Mary is depicted as bleeding, apparently “out its ass.” The author wonders whether Parker and Stone were doing something morally wrong by using blasphemy for comic effect. The author had an intuition that some moral boundary was crossed. But, though moral philosophy can sometimes begin with intuitions, it can't end with them. A philosophy that proclaims an action moral or immoral has to be grounded in good reasons and solid evidence along with (...) intuitions. The author examines this through the lens of utilitarianism. From a utilitarian perspective, it may be that blasphemous humor is morally acceptable on grounds that it makes a lot of people happy; or, it may be immoral on grounds that it causes a lot of shock, anger, and displeasure. An important part of morality involves being concerned with the consequences of actions and refraining from hurting others pointlessly. (shrink)

Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology’s potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought (...) to contribute to dialogue between ethics and the engineering community. Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants’ consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. Two overarching themes emerged: in ‘Privacy’, researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In ‘Choice’, researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of ethics as a critical partner to smart-home engineering. (shrink)

If we lack the kind of free will required for moral responsibility, what does that entail for the justification of particular punitive practices and punishment generally? Everyone seems to agree that incarceration can still be justified, and that retributive justifications of punishment will be unavailable. Beyond this, however, there is little agreement. In this article, I evaluate Derk Pereboom’s discussion of this issue in Living Without Free Will, and then articulate and defend my own positive position. In my view, significant (...) punishment can be justified on consequentialist grounds by the free will denier without betraying important concerns about justice. (shrink)

The rapid rise of international collaborative science has enabled access to genomic data. In this article, it is argued that to move beyond mapping genomic variation to understanding its role in complex disease aetiology and treatment will require extending data sharing for the purposes of clinical research translation and implementation.

In this article, I propose and argue for a conception of inhuman treatment. In the human rights context, I claim, inhuman treatment is that which is grossly degrading. Relative to “cruel,” “inhumane,” and “degrading,” “inhuman” has received little attention from moral philosophers. My aim here is to analyze this concept in greater depth in order to determine what it brings to discussions about punishment and other kinds of treatment. I begin by drawing distinctions between “inhuman,” “inhumane,” and “degrading.” Then, I (...) discuss analyses of “inhuman treatment” proposed by Jeremy Waldron and John Vorhaus. Although I find both conceptions problematic, discussing each helps me to set the stage for my proposal. After articulating and arguing for my own conception, I conclude by briefly explaining some of its implications. (shrink)

In June 2015, the Supreme Court of Canada struck down the Criminal Code's prohibition on assisted death. Just over a year later, the federal government crafted legislation to entrench medical assistance in dying (MAiD), the term used in Canada in place of physician‐assisted death. Notably, Canada became the first country to allow nurse practitioners to act as assessors and providers, a result of a strong lobby by the Canadian Nurses Association. However, a legislated approach to assisted death has proven challenging (...) in a number of areas. Although it facilitates a degree of accountability, precision and accessibility, it has also resulted in particular challenges negotiating the diverse perspectives of such a morally contentious act. One of these challenges is the tendency to conflate what is legal and what is moral in a modern liberal constitutionalism that places supreme value on autonomy and choice. Such a conflation tends to render invisible the legal and moral/ethical considerations necessary for nurses and nurse practitioners to remain ethical actors. In this paper, we introduce this conflation and then discuss the process of lawmaking in Canada, including the legalization of MAiD and the contributions of nursing to that legalization. We then engage in a hypothetical dialogue about the legal and moral/ethical implications of MAiD for nursing in Canada. We conclude with an appeal for morally sustainable workspaces that, when implementing MAiD, appropriately balance patient choices and nurses’ moral well‐being. (shrink)

The study of spatial cognition has provided considerable insight into how animals (including humans) navigate on the horizontal plane. However, the real world is three-dimensional, having a complex topography including both horizontal and vertical features, which presents additional challenges for representation and navigation. The present article reviews the emerging behavioral and neurobiological literature on spatial cognition in non-horizontal environments. We suggest that three-dimensional spaces are represented in a quasi-planar fashion, with space in the plane of locomotion being computed separately and (...) represented differently from space in the orthogonal axis bicoded.” We argue that the mammalian spatial representation in surface-travelling animals comprises a mosaic of these locally planar fragments, rather than a fully integrated volumetric map. More generally, this may be true even for species that can move freely in all three dimensions, such as birds and fish. We outline the evidence supporting this view, together with the adaptive advantages of such a scheme. (shrink)

We have argued that the neurocognitive representation of large-scale, navigable three-dimensional space is anisotropic, having different properties in vertical versus horizontal dimensions. Three broad categories organize the experimental and theoretical issues raised by the commentators: (1) frames of reference, (2) comparative cognition, and (3) the role of experience. These categories contain the core of a research program to show how three-dimensional space is represented and used by humans and other animals.

In the last decade, reading research has seen a paradigmatic shift. A new wave of computational models of orthographic processing that offer various forms of noisy position or context-sensitive coding have revolutionized the field of visual word recognition. The influx of such models stems mainly from consistent findings, coming mostly from European languages, regarding an apparent insensitivity of skilled readers to letter order. Underlying the current revolution is the theoretical assumption that the insensitivity of readers to letter order reflects the (...) special way in which the human brain encodes the position of letters in printed words. The present article discusses the theoretical shortcomings and misconceptions of this approach to visual word recognition. A systematic review of data obtained from a variety of languages demonstrates that letter-order insensitivity is neither a general property of the cognitive system nor a property of the brain in encoding letters. Rather, it is a variant and idiosyncratic characteristic of some languages, mostly European, reflecting a strategy of optimizing encoding resources, given the specific structure of words. Since the main goal of reading research is to develop theories that describe the fundamental and invariant phenomena of reading across orthographies, an alternative approach to model visual word recognition is offered. The dimensions of a possible universal model of reading, which outlines the common cognitive operations involved in orthographic processing in all writing systems, are discussed. (shrink)

The economic aspects of biobanking are intertwined with the social and scientific aspects. We describe two problems that structure the discussion about the economics of biobanking and which illustrate this intertwining. First, there is a ‘sustainability problem’ about how to maintain biobanks in the long term. Second, and representing a partial response to the first problem, there is a ‘commercialisation problem’ about how to deal with the voluntary altruistic relationship between participants and biobanks, and the potential commercial relationships that a (...) biobank may form. Social scientists have argued that the commercialisation problem is inadequate as a way to construct the multiple tensions that biobanks must negotiate. We agree that the commercialisation problem is an inadequate framework; turning to alternative accounts of bioeconomy, we suggest that contemporary consideration of the economics of biobanking primarily in terms of participants and their bodily tissue may reproduce the very commodification of science that these scholars critique. We suggest that an alternative conception of the economics of biobanking beyond the logics of commodification, which may thereby allow broader questions about the social and economic conditions and consequences of biobanks to be posed. (shrink)

In the course of a note on Aen. VIII. 86 sq. by Dr. J. W. Mackail , the Servian interpretation of line 96 is supported with the observation that 'note should be taken of Virgil's distinctive use of the ablative. “Placidoaequore siluas” in his language is practically equivalent to “placidas aequoreas siluas” just as “pictas abiete puppes” is to “pictas abiegnas puppes” or “uasta uoragine gurges” to “uastus uoraginosus gurges.”’.

Cette contribution revient sur le dialogue qui s’est développé depuis dix ans entre des chercheurs en Études théâtrales et des chercheurs en Sound Studies dans le cadre de deux projets successifs. Après avoir rappelé le contexte dans lequel a été élaborée la présente réflexion, précisé ce que j’entends ici par Sound Studies et donné quelques informations sur les Études théâtrales, je montrerai comment la relation intense que les secondes ont entretenue avec les premières a contribué à l’élaboration d’une véritable réécriture (...) de l’histoire du théâtre et comment les théâtrologues ont pu, en s’appuyant sur leur bases disciplinaires propres, opposer des approches critiques au modèle des Sound Students. (shrink)

Cette contribution revient sur le dialogue qui s’est développé depuis dix ans entre des chercheurs en Études théâtrales et des chercheurs en Sound Studies dans le cadre de deux projets successifs. Après avoir rappelé le contexte dans lequel a été élaborée la présente réflexion, précisé ce que j’entends ici par Sound Studies et donné quelques informations sur les Études théâtrales, je montrerai comment la relation intense que les secondes ont entretenue avec les premières a contribué à l’élaboration d’une véritable réécriture (...) de l’histoire du théâtre et comment les théâtrologues ont pu, en s’appuyant sur leur bases disciplinaires propres, opposer des approches critiques au modèle des Sound Students. (shrink)