Online participation in research is used increasingly to recruit geographically dispersed populations. Obtaining online consent is convenient, yet we know little about the acceptability of this practice. We carried out a serostudy among personnel returning to the UK/Ireland following deployment to West Africa during the 2014–2016 Ebola epidemic. We used an online procedure for consenting returnees and designed a small descriptive study to understand: how much of the consent material they read, how informed they felt and if they preferred online (...) to traditional face-to-face consent. Of 261 returnees, 111 completed the consent survey. Participants indicated a high level of engagement with the consent materials, with 67 per cent reporting having read all and 20 per cent having read ‘most’ of the materials. All participants indicated feeling completely or mostly informed about the purpose, methods and intended uses of the research, as well as what participation was required and what risks were involved. Only three participants indicated a preference for face-to-face consent. Free-text comments suggested that online consent may be an acceptable modality for uncomplicated and low-risk studies. The study sample was largely composed of health professionals, suggesting acceptability of online consent within this population. (shrink)

Praise is a common feature of interpersonal interaction. It is used to encourage, socialize, ingratiate, seduce, reward, and influence other people. These assorted usages reflect a widespread belief in the efficacy of praise for altering the behaviour and affective state of the recipient. Despite this assumed power of praise, and despite its salience and frequency in human social interaction, research interest in praise has been sporadic and intermittent, and not united within an all-embracing theoretical model.In this article we will present (...) an analysis of the effects of praise. We will begin by considering how to define praise. Next, we will examine the view of praise as social reinforcement, a conception which roots praise firmly within an empiricist framework; this appears to have been the predominant theoretical view guiding previous research on praise. We will conclude, however, that this view is conceptually inadequate to account for the empirical evidence. Because of that conclusion, our next step will be to provide a novel examination of the likely processes and consequences involved in praise. The remainder of the article will then be devoted to examining, where it is available, empirical evidence relevant to our analysis. (shrink)

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Severe staffing shortages have emerged as a prominent threat to maintaining usual standards of care during the COVID-2019 pandemic. In dire settings of crisis capacity, healthcare systems assume the ethical duty to maximise aggregate population-level benefit of existing resources. To this end, existing plans for rationing mechanical ventilators and intensive care unit beds in crisis capacity focus on selecting individual patients who are most likely to survive and prioritising these patients to receive scarce resources. However, staffing capacity is conceptually different (...) from availability of these types of discrete resources, and the existing strategy of identifying and prioritising patients with the best prognosis cannot be readily adapted to fit this real-world scenario. We propose that two alternative approaches to staffing resource allocation offer a better conceptual fit: prioritise the worst off: restrict access to acute care services and hospital admission for patients at relatively low clinical risk and prioritise staff interventions with high near-term value: universally restrict selected interventions and treatments that require substantial staff time and/or energy but offer minimal near-term patient benefit. These strategies—while potentially resulting in care that deviates from usual standards–support the goal of maximising the aggregate benefit of scarce resources in crisis capacity settings triggered by staffing shortages. This ethical framework offers a foundation to support institutional leaders in developing operationalisable crisis capacity policies that promote fairness and support healthcare workers. (shrink)

Bioethics and feminist scholarship has explored various justice implications of nonmedical sex selection and family balancing. However, prospective users’ viewpoints have been absent from the debate over the socially acceptable bounds of nonmedical sex selection. This qualitative study provides a set of empirically grounded perspectives on the moral values that underpin prospective users’ conceptualizations of justice in the context of a family balancing program in the United States. The results indicate that couples pursuing family balancing understand justice primarily in individualist (...) and familial terms rather than in terms of social justice for women and girls or for children resulting from sex selection. Study participants indicated that an individual’s desire for gender balance in their family is ethically complex and may not be inherently sexist, immoral, or socially consequential, particularly given the social context in which they live. Our findings suggest that the social conditions that contribute to prospective users’ desires for gender balance in their families may direct them away from recognizing or engaging broader social justice concerns relating to sexism and stratified reproduction. (shrink)

In the mid-twentieth century American architectural journals, including Architectural Forum, Architectural Record, and Progressive Architecture, routinely ran features on the state of contemporary church architecture in the United States. Rapid suburban expansion and the revival of religious life in the post-Depression, postwar era generated tremendous amounts of construction, with a great deal of work available for architects. This article examines the concerns and hopes of modernist editors in the 1940s–1960s, as they sought to stabilize a “direction” for church architecture. Specifically, (...) it examines the role of the architectural press as the self-established gatekeepers for acceptable church design, and their relationship with theologians, liturgists, and building commissions within the Catholic Church. Questions of authority and expertise lay behind the stark assertions commonplace in these discussions. Editors, generally not themselves Catholic, used their professional positions to weigh in on hot debates within the Catholic Church over the purpose of a church building, the relationship of the Church to modernity, and the appropriateness of new materials and engineering techniques. (shrink)

This essay argues that Catholic (magisterial) social teaching's division of ethics into public and private creates a structural lacuna which makes it almost impossible to envision a truly just situation for migrant domestic careworkers (MDCs) within the current horizon of Catholic social thought. Drawing on a variety of sociological studies, I conclude that it is easy for MDCs to “disappear” between two countries, two families, and, finally, two sets of ethical norms. If the magisterium genuinely wishes Catholic ethicists to address (...) the plight of these migrant women, normative Catholic social teaching must pay more attention to household sociological realities and more fully absorb the feminist critique of the sharp line between the public and the private, between care and paid work. (shrink)

We are grateful to Friesen and colleagues for drawing attention to the tension between the protection of populations that may experience vulnerability with their inclusion in research (Friesen et a...

The reality of resource limitation during the Coronavirus Disease 2019 pandemic has deeply challenged established approaches to healthcare system emergency response. Early preparation du...

Anorexia nervosa and obsessive–compulsive disorder are commonly reported to co-occur and present with overlapping symptomatology. Executive functioning difficulties have been implicated in both mental health conditions. However, studies directly comparing these functions in AN and OCD are extremely limited. This review provides a synthesis of behavioral and neuroimaging research examining executive functioning in AN and OCD to bridge this gap in knowledge. We outline the similarities and differences in behavioral and neuroimaging findings between AN and OCD, focusing on set shifting, (...) working memory, response inhibition, and response monitoring. This review aims to facilitate understanding of transdiagnostic correlates of executive functioning and highlights important considerations for future research. We also discuss the importance of examining both behavioral and neural markers when studying transdiagnostic correlates of executive functions. (shrink)

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...) movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care. (shrink)

Angels are the ultimate stranger. They come from another world and have a special place in the art of the Russian Jewish painter Marc Chagall (1887-1985). In My Life (1923) the young Chagall recalls one memorable night in Saint-Petersburg. Drifting into sleep in the corner of a room (all he could afford) he suddenly saw the ceiling open and a winged being, surrounded by light and blue air, hovered above him before disappearing through the ceiling again.

While provisions of youth sports concussion laws are very similar, little is known as to how they are being implemented, factors that promote or impede implementation, or the level of compliance in each jurisdiction. We aimed to describe state experiences with implementation in order to inform ongoing efforts to reduce the harm of sports-related traumatic brain injury and to guide future evaluations of the laws’ impacts and the development of future public health laws. We conducted key-informant interviews in 35 states (...) with recently enacted concussion legislation. States varied considerably in their readiness and capacity for implementation. Factors facilitating implementation included existing partnerships, procedures, and resources; centralized implementation authority; prior related efforts; and involvement in the policymaking process by those now charged with implementation. Inhibitors included ambiguous statutory language, unclear delegation of authority, and compliance difficulties. Ongoing challenges persist, including primary prevention; determining which providers are qualified to make return-to-play assessments and contents of those assessments; compliance difficulties in rural and under-served areas; and unclear responsibility for enforcement. Despite the similarity of youth sports concussion laws, early evidence suggests there is considerable variation in their implementation. These findings are critical for ongoing empirical investigations to accurately evaluate the laws’ provisions and to identify successful legal approaches to protecting young athletes. (shrink)

Over the past decade, a flurry of media stories devoted to sports-related concussions have drawn attention to the previously “silent epidemic” of traumatic brain injury in athletes. From 2001 to 2009, the annual number of sports-related TBI emergency department visits in individuals age 19 and under climbed from 153,375 to 248,414, an increase of increase of 62 percent. Multiple head injuries place youth athletes at risk for serious health conditions, including cerebral swelling, brain herniation, and even death — postconcussive conditions (...) that have collectively been referred to as “second impact syndrome.” Studies have shown that children and teens — and girls, in particular — are more likely to sustain a concussion and have a longer recovery time than adults. Recent research also suggests that even subconcussive hits in children and adolescents may result in longer-term health effects such as decreased cognitive functioning, increased rates of depression, memory problems, and mild cognitive impairment. (shrink)

The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...) are embracing this populist rhetoric to encourage wider public participation. We examine the ethical and social implications of this recruitment strategy. We begin by surveying examples of “citizen science” outside of biomedicine, as paradigmatic of the aspirations this democratizing rhetoric was originally meant to embody. Next, we discuss the ways these aspirations become articulated in the biomedical context, with a view to drawing out the multiple and potentially conflicting meanings of “public engagement” when citizens are also the subjects of the science. We then illustrate two uses of public engagement rhetoric to gain public support for national biomedical research efforts: its post-hoc use in the “care.data” project of the National Health Service in England, and its proactive uses in the “Precision Medicine Initiative” of the United States White House. These examples will serve as the basis for a normative analysis, discussing the potential ethical and social ramifications of this rhetoric. We pay particular attention to the implications of government strategies that cultivate the idea that members of the public have a civic duty to participate in government-sponsored research initiatives. We argue that such initiatives should draw from policy frameworks that support normative analysis of the role of citizenry. And, we conclude it is imperative to make visible and clear the full spectrum of meanings of “citizen science,” the contexts in which it is used, and its demands with respect to participation, engagement, and governance. (shrink)

ABSTRACTFacial stimuli are widely used in behavioural and brain science research to investigate emotional facial processing. However, some studies have demonstrated that dynamic expressions elicit stronger emotional responses compared to static images. To address the need for more ecologically valid and powerful facial emotional stimuli, we created Dynamic FACES, a database of morphed videos from younger, middle-aged, and older adults displaying naturalistic emotional facial expressions. To assess adult age differences in emotion identification of dynamic stimuli and to provide normative ratings (...) for this modified set of stimuli, healthy adults categorised for each video the emotional expression displayed, rated the expression distinctiveness, estimated the age of the face model, and rated the naturalness of the expression. We found few age differences in emotion identification when using dynamic stimuli. On... (shrink)

Ethical reasoning and decision-making may be thought of as 9professional skills9, and in this sense are as relevant to efficient clinical practice as the biomedical and clinical sciences are to the diagnosis of a patient9s problem. Despite this, however, undergraduate medical programmes in ethics tend to focus on the teaching of bioethical theories, concepts and/or prominent ethical issues such as IVF and euthanasia, rather than the use of such ethics knowledge (theories, principles, concepts, rules) to clinical practice. Not surprisingly, many (...) students and clinicians experience considerable difficulty in using what they know about ethics to help them make competent ethical decisions in their day-to-day clinical practice. This paper describes the development of a seminar programme for teaching senior medical students a more systematic approach to ethical reasoning and analysis and clinical decision-making. (shrink)

In a world surrounded by smart objects from sensors to automated medical devices, the ubiquity of ‘smart’ seems matched only by its lack of clarity. In this article, we use our discussions with expert stakeholders working in areas of implantable medical devices such as cochlear implants, implantable cardiac defibrillators, deep brain stimulators and in vivo biosensors to interrogate the difference facets of smart in ‘implantable smart technologies’, considering also whether regulation needs to respond to the autonomy that such artefacts carry (...) within them. We discover that when smart technology is deconstructed it is a slippery and multi-layered concept. A device’s ability to sense and transmit data and automate medicine can be associated with the ‘sting’ of autonomy being disassociated from human control as well as affecting individual, group, and social environments. (shrink)

Evidence that placebo acupuncture is an effective treatment for chronic pain presents a puzzle: how do placebo needles appearing to patients to penetrate the body, but instead sitting on the skin’s surface in the manner of a tactile stimulus, evoke a healing response? Previous accounts of ritual touch healing in which patients often described enhanced touch sensations suggest an embodied healing mechanism. In this qualitative study, we asked a subset of patients in a singleblind randomized trial in irritable bowel syndrome (...) to describe their treatment experiences while undergoing placebo treament. Analysis focused on patients’ unprompted descriptions of any enhanced touch sensations and any significance patients assigned to the sensations. We found in 5/6 cases, patients associated sensations including “warmth” and “tingling” with treatment efficacy. The conclusion offers a “neurophenomenological” account of the placebo effect by considering dynamic effects of attentional filtering on early sensory cortices, possibly underlying the phenomenology of placebo acupuncture. (shrink)

Abstract:While a ubiquitous phenomenon, initial public offerings (IPOs) have received no attention in the ethics literature. We provide an overview of a series of potential conflicts of interest that pervade the IPO process. We also report the results of an empirical assessment of IPOs and those elements that may inform a substantive moral hazard faced by key players in the period prior to and just after an IPO.

As a mother of two sons with adrenoleukodystrophy the author of this paper writes about her experiences of genetic counselling following the diagnosis. She discusses the dilemmas, emotions and aftermath this knowledge has brought to her family and the roles she played. Personal concerns are raised about the values guiding genetic counselling which, she found, focused on the technical details without considering the ethical implications arising from the new knowledge or the emotional dilemmas of prenatal testing. Some consequences of choice (...) and the value of hope are discussed. She concludes by challenging genetic counsellors to deliver a service which not only provides technical information but is cognisant of the ethical considerations this information may foist upon a family. (shrink)

The Health Protection Agency has recently attempted to create a postmortem tissue archive to determine the prevalence of abnormal prion protein. The success of this archive was prevented because the Health Protection Agency could not convince coroners to support the study’s methodology and participate on that basis. The findings of this paper detail and support the view that the Coroners’ Society of England and Wales’s refusal to participate was misguided and failed to appreciate that coroners have a moral obligation to (...) protect public health. Measures to assist coroners in fulfilling this role are proposed. (shrink)

Community-level legal and policy innovations or “experiments” can be important levers to improve health. States and localities are empowered through the 10th Amendment of the United States Constitution to use their police powers to protect the health and welfare of the public. Many legal and policy tools are available, including: the power to tax and spend; regulation; mandated education or disclosure of information, modifying the environment — whether built or natural ; and indirect regulation. These legal and policy interventions can (...) be targeted to specific needs at the community level and are often relatively low-cost, but high impact interventions. As every community is different, effective laws and policies will vary. This freedom allows states and localities to, as Justice Louis Brandeis argued, truly serve as “laboratories of democracy.”. (shrink)

Many areas of business ethics research are “sensitive.” We provide an empirical assessment of the randomized response techniquewhich provides absolute anonymity to subjects and “legal immunity” to the researcher. Beyond that, RRT techniques provide complete disclosure to subjects, unconditional privacy is maintained, and there is no deception.

The research described here contributes to the extant empirical research on business ethics education by examining outcomes drawn from the literature on positive organizational scholarship (POS). The general research question explored is whether a course on ethical decision-making in business could positively influence students’ confidence in their abilities to handle ethical problems at work (i.e., moral efficacy), boost the relative importance of ethics in their work lives (i.e., moral meaningfulness), and encourage them to be more courageous in raising ethical problems (...) at work even if it is unpopular (i.e., moral courage). Specifically, the study used a rigorous quasi-experimental pretest–posttest research design with a treatment (N = 30) and control group (N = 30) to investigate whether a graduate-level course in business ethics could influence students’ levels of moral efficacy, meaningfulness, and courage. Findings revealed that participants in the business ethics treatment course experienced significant positive increases in each of the three outcome variables as compared to the control group. The largest increase was in moral efficacy, followed by moral courage, and finally, moral meaningfulness. These findings are discussed in the context of the current research on business ethics education and POS. Implications for future research are discussed. (shrink)

Many areas of business ethics research are “sensitive.” We provide an empirical assessment of the randomized response technique which providesabsoluteanonymity to subjects and “legal immunity” to the researcher. Beyond that, RRT techniques provide complete disclosure to subjects, unconditional privacy is maintained, and there is no deception.

The Adverse Outcome Pathway (AOP) concept is a knowledge assembly and communication tool to facilitate the transparent translation of mechanistic information into outcomes meaningful to the regulatory assessment of chemicals. The AOP framework and associated knowledgebases (KBs) have received significant attention and use in the regulatory toxicology community. However, it is increasingly apparent that the potential stakeholder community for the AOP concept and AOP KBs is broader than scientists and regulators directly involved in chemical safety assessment. In this paper we (...) identify and describe those stakeholders who currently—or in the future—could benefit from the application of the AOP framework and knowledge to specific problems. We also summarize the challenges faced in implementing pathway-based approaches such as the AOP framework in biological sciences, and provide a series of recommendations to meet critical needs to ensure further progression of the framework as a useful, sustainable and dependable tool supporting assessments of both human health and the environment. Although the AOP concept has the potential to significantly impact the organization and interpretation of biological information in a variety of disciplines/applications, this promise can only be fully realized through the active engagement of, and input from multiple stakeholders, requiring multi-pronged substantive long-term planning and strategies. (shrink)

If stem cell-based therapies are developed, we will likely confront a difficult problem of justice: for biological reasons alone, the new therapies might benefit only a limited range of patients. In fact, they might benefit primarily white Americans, thereby exacerbating long-standing differences in health and health care.

The protection of employee rights in the workplace is one of the fundamental ethical questions facing organizations today. Organizations differ in the extent to which they protect the rights of both employees and themselves as employers, yet little research has examined the types of organizations that have rights protection policies. Instead of the classic normative approach to ethical issues, this study took a contextual approach to the management of rights in the workplace through human resource policies. Associations were found between (...) the organizational characteristics of size, industry, unionization, business condition, and the existence of employee and employer rights policies. Additional analyses revealed underlying dimensions in right policies and the relationship of organizational characteristics to these aspects of rights management were examined. The results are discussed in terms of understanding human resource rights management within an organizational context. (shrink)

The progression of research and scholarly inquiry does not occur in isolation and is wholly dependent on accurate reporting of methods and results, and successful replication of prior work. Without mechanisms to correct the literature, much time and money is wasted on research based on a crumbling foundation. These guidelines serve to outline the respective responsibilities of researchers, institutions, agencies, and publishers or editors in maintaining the integrity of the research record. Delineating these complementary roles and proposing solutions for common (...) barriers provide a foundation for best practices. (shrink)

The current study examines patterns of attachment/self-protective strategies and rates of unresolved loss/trauma in children and adolescents presenting to a multidisciplinary gender service. Fifty-seven children and adolescents (8.42–15.92 years; 24 birth-assigned males and 33 birth-assigned females) presenting with gender dysphoria participated in structured attachment interviews coded using dynamic-maturational model (DMM) discourse analysis. The children with gender dysphoria were compared to age- and sex-matched children from the community (non-clinical group) and a group of school-age children with mixed psychiatric disorders (mixed psychiatric (...) group). Information about adverse childhood experiences (ACEs), mental health diagnoses, and global level of functioning was also collected. In contrast to children in the non-clinical group, who were classified primarily into the normative attachment patterns (A1-2, B1-5, and C1-2) and who had low rates of unresolved loss/trauma, children with gender dysphoria were mostly classified into the high-risk attachment patterns (A3-4, A5-6, C3-4, C5-6, and A/C) (χ2= 52.66;p< 0.001) and had a high rate of unresolved loss/trauma (χ2= 18.64;p< 0.001). Comorbid psychiatric diagnoses (n= 50; 87.7%) and a history of self-harm, suicidal ideation, or symptoms of distress were also common. Global level of functioning was impaired (range 25–95/100; mean = 54.88;SD= 15.40; median = 55.00). There were no differences between children with gender dysphoria and children with mixed psychiatric disorders on attachment patterns (χ2= 2.43;p= 0.30) and rates of unresolved loss and trauma (χ2= 0.70;p= 0.40).Post hocanalyses showed that lower SES, family constellation (a non-traditional family unit), ACEs—including maltreatment (physical abuse, sexual abuse, emotional abuse, neglect, and exposure to domestic violence)—increased the likelihood of the child being classified into a high risk attachment pattern. Akin to children with other forms of psychological distress, children with gender dysphoria present in the context of multiple interacting risk factors that include at-risk attachment, unresolved loss/trauma, family conflict and loss of family cohesion, and exposure to multiple ACEs. (shrink)