This paper outlines a major empirical study that is being undertaken by an interdisciplinary team into genetic discrimination in Australia. The three-year study will examine the nature and extent of this newly emerging phenomenon across the perspectives of consumers, third parties and the legal system, and will analyse its social and legal dimensions. Although the project is confined to Australia, it is expected that the outcomes will have significance for the wider research community as this is the most substantial study (...) of its kind to be undertaken to date into genetic discrimination. (shrink)

Both individuals with diagnosed with Autism Spectrum Disorder and individuals high in psychopathic traits show reduced susceptibility to contagious yawning; that is, yawning after seeing or hearing another person yawn. Yet it is unclear whether the same underlying processes are responsible for the relationship between reduced contagion and these very different types of clinical traits. College Students watched videos of individuals yawning or scratching while their eye movements were tracked. They completed the Interpersonal Reactivity Index, the Autism-Spectrum Quotient, the Psychopathy (...) Personality Inventory-Revised, and the Adolescent and Adult Sensory Processing Disorder Checklist. Both psychopathic traits and autistic traits showed an inverse relationship to contagious yawning, consistent with previous research. However, the relationship between autistic traits and contagious yawning was moderated by eye gaze. Furthermore, participants high in autistic traits showed typical levels of contagious itching whereas adults high in psychopathic traits showed diminished itch contagion. Finally, only psychopathic traits were associated with lower overall levels of empathy. The findings imply that the underlying processes contributing to the disruptions in contagious yawning amongst individuals high in autistic vs. psychopathic traits are distinct. In contrast to adults high in psychopathic traits, diminished contagion may appear amongst people with high levels of autistic traits secondary to diminished attention to the faces of others, and in the absence of a background deficit in emotional empathy. (shrink)

Paediatric Intensive Care Units (PICU) are complex interdisciplinary environments where challenging, high stakes decisions are frequently encountered. We assert that appropriate decisions are more likely to be made if the decision-making process is comprehensive, reasoned, and grounded in thoughtful deliberation. Strategies to overcome barriers to high quality decision-making including, cognitive and implicit bias, group think, inadequate information gathering, and poor quality deliberation should be incorporated. Several general frameworks for decision-making exist, but specific guidance is scarce. In this paper, we provide (...) specific guidance on collaborative complex decision-making for PICUs. The proposed approach is on principles of procedural justice and pragmatic hermeneutics. The process encompasses set-up/planning, information gathering, question formulation, analysis (perspectives, values, and principles), action plan development, decision documentation, and a review and appeal mechanism. The process can be adapted to suit other clinical contexts. Research evaluating the process, exploring how best to develop education for clinicians, and how to build a culture that values high quality deliberation, is worthwhile. (shrink)

The development of any novel reproductive technology involving manipulation of human embryos is almost inevitably going to be controversial and evoke sincerely held, but diametrically opposing views. The plethora of scientific, ethical and legal issues that surround the clinical use of such techniques fuels this divergence of opinion. During the policy change that was required to allow the use of mitochondrial donation in the UK, many of these issues were intensely scrutinised by a variety of people and in multiple contexts. (...) This extensive process resulted in the publication of several reports that informed the recommendations made to government. We have been intrinsically involved in the development of mitochondrial donation, from refining the basic technique for use in human embryos through to clinical service delivery, and have taken the opportunity in this article to offer our own perspective on the issues it raises. (shrink)

Working in the fragment of Martin-Löfs extensional type theory [12] which has products (but not sums) of dependent types, we consider two additional assumptions: firstly, that there are (strong) equality types; and secondly, that there is a type which is universal in the sense that terms of that type name all types, up to isomorphism. For such a type theory, we give a version of Russell's paradox showing that each type possesses a closed term and (hence) that all terms of (...) each type are provably equal. We consider the kind of category theoretic structure which corresponds to this kind of type theory and obtain a categorical version of the paradox. A special case of this result is the degeneracy of a locally cartesian closed category with a morphism which is generic in the sense that every other morphism in the category can be obtained from it via pullback. (shrink)

Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in the conduct of clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to each other and engage in (...) substantive discussion. Every year, the group selects the four most interesting cases with accompanying commentaries for publication in the American Journal of Bioethics. This timely book brings together these cases and commentaries under a range of common themes for the first time, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations. Key Features- Comprehensive collection of cases and commentaries, chosen to reflect the range of issues faced by clinical researchers and oversight committees and illustrate the diversity of analysis that can arise. Supplemented by short introductions to each section. Focus on ethical rather than regulatory issues. Essential Reading for graduate students in bioethics and post-doctoral bioethics fellows, and useful for all participants in training grants that are funded by either NIH or NSF Presenting challenging cases to stimulate reflection, the book provides invaluable guidance to clinicians in training and in practice and to investigators, bioethics consultants, regulators, and oversight bodies. (shrink)

Transoral laser microsurgery applies to the piecemeal removal of malignant tumours of the upper aerodigestive tract using the CO2 laser under the operating microscope. This method of surgery is being increasingly popularised as a single modality treatment of choice in early laryngeal cancers (T1 and T2) and occasionally in the more advanced forms of the disease (T3 and T4), predomi- nantly within the supraglottis. Thomas Kuhn, the American physicist turned philosopher and historian of science, coined the phrase ‘paradigm shift’ in (...) his groundbreaking book The Structure of Scientific Revolutions. He argued that the arrival of the new and often incompatible idea forms the core of a new paradigm, the birth of an entirely new way of thinking. This article discusses whether Steiner and col- leagues truly brought about a paradigm shift in oncological surgery. By rejecting the principle of en block resection and by replacing it with the belief that not only is it oncologically safe to cut through the substance of the tumour but in doing so one can actually achieve better results, Steiner was able to truly revolutionise the man- agement of laryngeal cancer. Even though within this article the repercussions of his insight are limited to the upper aerodigestive tract oncological surgery, his willingness to question other peoples’ dogma makes his contribution truly a genuine paradigm shift. (shrink)

Aims: To assess patient receipt of written information. To ensure patients understand the written information about a resuscitation policy and to determine whether they disapproved of or had concerns about the policy. Methods: All admissions to four wards of the hospital were approached for an interview. A set questionnaire was asked by one of 2 interviewers. Results: 72% of 572 admissions were interviewed. Refusal accounted for only 2 of the people not interviewed. 11% were unable to advocate for themselves by (...) reason of mental incompetence, inability to communicate or impairment secondary to their illness. Of the 401 interviewed only 49% recalled receiving the patient information booklet. Few patients (17%) recalled reading the information in the patient information booklet. They were all then given the paragraph about the hospital’s resuscitation policy. 352 were asked their understanding and only 61% demonstrated that they understood the paragraph. 91% of all 401 patients approved of the hospital having the option of DNR orders. 31% of people however had concerns related to DNR orders. These are discussed. Conclusions: Many acutely unwell patients are unable to advocate for themselves. Written information is a poor method of communicating with patients. There was limited receipt of the information and many misunderstood the paragraph about the hospitals resuscitation policy. There was a wide range of patient thoughts and concerns expressed. (shrink)

The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to (...) highlight four contexts in which REC can be a valuable resource. REC assists: 1) investigators before and after the regulatory review; 2) investigators, IRBs, and other research administrators facing challenging and novel ethical issues; 3) IRBs and investigators with the increasing challenges of informed consent and risk/benefit analysis; and 4) in providing flexible and collaborative assistance to overcome study hurdles, mediate conflicts within a team, or directly engage with research participants. Institutions that have established, or plan to establish, REC services should work to raise the visibility of their service and engage in open communication with existing clinical ethics consult services as well as the IRB. While the IRB system remains the foundation for the ethical review of research, REC can be a valuable service for investigators, regulators, and research participants aligned with the goal of supporting ethical research. (shrink)

Measuring outcomes using quantitative analytic methods is the hallmark of scientific research in healthcare. For clinical ethics support services (CESS), tangible outcome metrics are lacking and literature examining CESS quality is limited to evaluation of single cases or the influence on individual healthcare professional’s perceptions or behaviour. This represents an enormous barrier to implementing and evaluating ethics initiatives to improve quality. In this context, Kok _et al_ propose a theoretical framework for how moral case deliberation (MCD) can drive quality at (...) an organisational-level, termed _morisprudence_ 1. By offering mechanistic insights into how MCD can lead to organisational learning and quality improvement (QI), they provide a roadmap for actionable items to measure quality. As conceptualised, _morisprudence_ follows accumulation of organisational practical wisdom from a repertoire of ‘paradigmatic’ MCDs, aiding identification of patterns of morally important features. Here, there are parallels between healthcare professionals’ clinical judgement, where past experience... (shrink)

Fractal patterns offer one way to represent the rough complexity of the natural world. Whilst they dominate many of our visual experiences in nature, little large-scale perceptual research has been done to explore how we respond aesthetically to these patterns. Previous research (Taylor et al., 2011) suggests that the fractal patterns with mid-range fractal dimensions have universal aesthetic appeal. Perceptual and aesthetic responses to visual complexity have been more varied with findings suggesting both linear (Forsythe et al., 2011) and (...) curvilinear (Berlyne, 1970) relationships. Individual differences have been found to account for many of the differences we see in aesthetic responses but some, such as culture, have received little attention within the fractal and complexity research fields. This 2-study paper aims to test preference responses to fractal dimension and visual complexity, using a large cohort (N=443) of participants from around the world to allow universality claims to be tested. It explores the extent to which age, culture and gender can predict our preferences for fractally complex patterns. Following exploratory analysis that found strong correlations between fractal dimension and visual complexity, a series of linear mixed-effect models were implemented to explore if each of the individual variables could predict preference. The first tested a linear complexity model (likelihood of selecting the more complex image from the pair of images) and the second a mid-range fractal dimension model (likelihood of selecting an image within mid-range). Results show that individual differences can reliably predict preferences for complexity across culture, gender and age. However, in fitting with current findings the mid-range models show greater consistency in preference not mediated by gender, age or culture. This paper supports the established theory that the mid-range fractal patterns appear to be a universal construct underlying preference but also highlights the fragility of universal claims by demonstrating individual differences in preference for the interrelated concept of visual complexity. This highlights a current stalemate in the field of empirical aesthetics. (shrink)

A major challenge in neuroscience is to understand what happens to a brain as it ages. Such insights could make it possible to distinguish between individuals who will undergo typical aging and those at risk for neurodegenerative disease. Over the last quarter century, thousands of human brain imaging studies have probed the neural basis of age-related cognitive decline. “Aging” studies generally enroll adults over the age of 65, a historical precedent rooted in the average retirement age of U.S. wage-earners. A (...) consequence of this research tradition is that it overlooks one of the most significant neuroendocrine changes in a woman’s life: the transition to menopause. The menopausal transition is marked by an overall decline in ovarian sex steroid production – up to 90% in the case of estradiol – a dramatic endocrine change that impacts multiple biological systems, including the brain. Despite sex differences in the risk for dementia, the influence that biological sex and sex hormones have on the aging brain is historically understudied, leaving a critical gap in our understanding of the aging process. In this Perspective, we highlight the influence that endocrine factors have on the aging brain. We devote particular attention to the neural and cognitive changes that unfold in the middle decade of life, as a function of reproductive aging. Next, we consider emerging evidence from animal and human studies that other endocrine factors occurring earlier in life (e.g. pregnancy, hormonal birth control use) also shape the aging process. Applying a women’s health lens to. (shrink)

This is the first comprehensive evaluation of Charles Taylor's work and a major contribution to leading questions in philosophy and the human sciences as they face an increasingly pluralistic age. Charles Taylor is one of the most influential contemporary moral and political philosophers: in an era of specialisation he is one of the few thinkers who has developed a comprehensive philosophy which speaks to the conditions of the modern world in a way that is compelling to specialists in (...) various disciplines. This collection of specially commissioned essays brings together twelve distinguished scholars from a variety of fields to discuss critically Taylor's work. The topics range from the history of philosophy, to truth, modernity and postmodernity, theism, interpretation, the human sciences, liberalism, pluralism and difference. Taylor responds to all the contributions and re-articulates his own views. (shrink)

Large-scale data systems are increasingly envisioned as tools for justice, with big data analytics offering a key opportunity to advance health equity. Health systems face growing public pressure to collect data on patient “social factors,” and advocates and public officials seek to leverage such data sources as a means of system transformation. Despite the promise of this “data-driven” strategy, there is little empirical work that examines big data in action directly within the sites of care expected to transform. In this (...) article, I present a case study on one such initiative, focusing on a large public safety-net health system’s initiation of sexual orientation and gender identity data collection within the clinical setting. Drawing from ethnographic fieldwork and in-depth interviews with providers, staff, and administrators, I highlight three main challenges that elude big data’s grasp on inequality: provider and staff’s limited understanding of the social significance of data collection; patient perception of the cultural insensitivity of data items; and clinic need to balance data requests with competing priorities within a constrained time window. These issues reflect structural challenges within safety-net care that big data alone are unable to address in advancing social justice. I discuss these findings by considering the present data-driven strategy alongside two complementary courses of action: diversifying the health professions workforce and clinical education reform. To truly advance justice, we need more than “just data”: we need to confront the fundamental conditions of social inequality. (shrink)

Ethical guidance from the British Medical Association about treating doctor–patients is compared and contrasted with evidence from a qualitative study of general practitioners who have been patients. Semistructured interviews were conducted with 17 GPs who had experienced a significant illness. Their experiences were discussed and issues about both being and treating doctor–patients were revealed. Interpretative phenomenological analysis was used to evaluate the data. In this article data extracts are used to illustrate and discuss three key points that summarise the BMA (...) ethical guidance, in order to develop a picture of how far experiences map onto guidance. The data illustrate and extend the complexities of the issues outlined by the BMA document. In particular, differences between experienced GPs and those who have recently completed their training are identified. This analysis will be useful for medical professionals both when they themselves are unwell and when they treat doctor–patients. It will also inform recommendations for professionals who educate medical students or trainees. (shrink)

This book is a collection of secondary essays on America's most important philosophic thinkers—statesmen, judges, writers, educators, and activists—from the colonial period to the present. Each essay is a comprehensive introduction to the thought of a noted American on the fundamental meaning of the American regime.

Almost uniquely for someone whose thought has been so influential, Socrates wrote nothing himself, and our knowledge of his philosophical opinions and method is derived mainly from the engaging and infuriating figure who appears in Plato's dialogues. The philosophy of Socrates and Plato is therefore closely interconnected, and the most powerful elements of Plato's mature thought form the basis of an interpretation of knowledge, reality, and morality which is still held and debated by philosophers today. Aristotle's approach to these and (...) other issues is in many ways directly opposed to that of Plato, and has been no less influential. (shrink)

Aristotle's Politics is widely recognized as one of the classics of the history of political philosophy, and like every other such masterpiece, it is a work about which there is deep division.

Michigan is a critical agricultural state, and small family farms are a crucial component of the state’s food sector. This paper examines how the race/ethnicity of the family farm owners/operators is related to farm characteristics, financing, and impacts of the pandemic. It compares 75 farms owned/operated solely by Whites and 15 with People of Color owners/operators. The essay examines how farmers finance their farm operations and the challenges they face doing so. The article also explores how the Coronavirus-19 pandemic affected (...) farming operations, the financial viability of farms, and how farmers responded to the challenges posed by the pandemic. The study found that People of Color farm owners/operators were younger than White farm owners/operators. The People of Color farm owners/operators tended to manage smaller farms for shorter periods than White farm owners/operators. Though two-thirds of the Farmers of Color owned their farms, they were more financially vulnerable than White farm owners/operators. The farmers studied had difficulty obtaining loans to finance their farms. Farmers reported increasing requests from people for food assistance during the pandemic. Farmers responded to the pandemic by participating in government programs such as the Farm to Families Food Box Program that purchased their produce. It allowed farmers to supply emergency food assistance programs with products from their farms. The products went to families receiving food assistance from soup kitchens, food banks, and other community-based nonprofits. (shrink)

Can emancipatory, decolonial histories of science be extracted from objects collected from—or made visible to history by—the archives of colonialism? To answer this question, this essay presents the case study of a rhinoceros horn amulet (qarn al-khartit), an ethnographic object collected by the British anthropologist Winifred Blackman during her fieldwork in Egypt in the late 1920s. Markedly decentering the traditional colonial history of how the rhinoceros horn was collected and displayed as an object in European museums, the essay follows the (...) trail of the rhinoceros horn back to the site of its collection in Egypt to reveal a strikingly different story: one of non-Western histories of science/magic/medicine, gender, race, and enslavement, all set against the backdrop of Egypt’s imperial pursuits in East Africa. The essay proposes the method of decolonial materialism to “read” objects, like the rhinoceros horn, as archives of scientific knowledge otherwise. (shrink)

Early versions of satellite and radiosonde datasets suggested that the tropical surface had warmed more than the troposphere, while climate models consistently showed tropospheric amplification of surface warming in response to human-caused increases in greenhouse gases. We revisit such comparisons here using new observational estimates of surface and tropospheric temperature changes. We find that there is no longer a serious discrepancy between modeled and observed trends in the tropics. Our results contradict a recent claim that all simulated temperature trends in (...) the tropical troposphere are inconsistent with observations. This claim was based on the use of older radiosonde and satellite datasets and on two methodological errors: the neglect of observational trend uncertainties introduced by interannual climate variability and application of an inappropriate statistical “consistency test”.This emerging reconciliation of models and observations has two primary explanations. First, because of changes in the treatment of buoy and satellite information, new surface temperature datasets yield slightly reduced tropical warming relative to earlier versions. Second, recently developed satellite and radiosonde datasets now show larger warming of the tropical lower troposphere. In the case of a new satellite dataset from remote sensing systems, enhancedRSS warming is due to an improved procedure of adjusting for inter-satellite biases. When the RSS-derived tropospheric temperature trend is compared with four different observed estimates of surface temperature change, the surface warming is invariably amplified in the tropical troposphere, consistent with model results. Even if we use data from a second satellite dataset with smaller tropospheric warming than in remote sensing systems RSS, observed tropical lapse rates are not significantly different from those in all model simulations.Our results contradict a recent claim that all simulated temperature trends in the tropical troposphere and in tropical lapse rates are inconsistent with observations. This claim was based on the use of older radiosonde and satellite datasets and on two methodological errors: the neglect of observational trend uncertainties introduced by interannual climate variability and application of an inappropriate statistical “consistency test”. (shrink)

The value of a company’s ethical reputation has become a focal point for management researchers. We seek to join this conversation and extend the research centered on a firm’s ethical reputation. We accomplish this by shifting our focus away from its impact on external stakeholders to its impact on internal stakeholders. To this end, we rely on signaling theory to explain why a firm’s ethical reputation matters to its employees in an effort to bridge the macro–micro research gap. Across two (...) studies, we propose and demonstrate that a firm’s ethical reputation impacts employee subjective career success in form of career opportunities and work–life balance. Given our signaling theory framework, we also identify and explain when two industry-level characteristics operate as boundary conditions that distort a firm’s ethical reputation signaling properties. Specifically, the results demonstrate that a firm’s ethical reputation is positively related to employees’ perceptions of career opportunities and work–life balance. The results of our studies also demonstrate that the relatively high levels of industry competition and industry regulation weaken the positive impact of a firm’s ethical reputation on career opportunities and work–life balance. Theoretical and practical implications are discussed. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Parenting Adults with ASD: Lessons for Researchers and CliniciansCassandra R. Newsom, Amy S. Weitlauf, Cora M. Taylor, and Zachary E. WarrenRecent reviews of treatments for individuals with autism spectrum disorders (ASD) reveal how little we still know about how to help adolescents with ASD and their families successfully transition into adulthood (Shattuck et al., 2012b; Taylor et al., 2012a). Shattuck and colleagues found that services in the (...) United States for adults with ASD were marked by high unemployment rates, a reliance on families to provide care across the lifespan, high turnover rates in front-line service providers, insufficient transition planning for high school students, and generally insufficient services to meet current needs. In a recent Agency for Healthcare Research and Quality (AHRQ) Comparative Effectiveness Review, the authors similarly found that there is very little evidence available to pinpoint specific intervention approaches for adolescents and young adults with ASD due to a lack of good quality studies. This was especially true for evidence-based approaches to support the transition of youth with ASD to adulthood (Taylor et al., 2012a).For the last decade, with dramatic increases in both ASD awareness and estimates of ASD prevalence, our field has understandably focused intensely on improving early detection and treatment of ASD. Our diagnostic tools and understanding of ASD presentation in very young children has improved tremendously. Different from many of the young adults in these stories, who were often diagnosed in their early teens, we now aim to identify children well before their third birthdays. Research has consistently shown that early and intense ASD-specific intervention can dramatically enhance outcomes for children with ASD. As such, there has been heavy investment in attempting to take full advantage of this early window of neuro-plasticity. However, as these stories illustrate, these children grow up. Their needs change, and our systems are often poorly equipped to help them live fulfilling lives, capitalize on their talents, and obtain independence and equal access, while still providing a safe, supportive environment. Without readily accessible and understandable coordinated systems of care, parents are forced to adopt the multiple roles of case manager, teacher, therapist, community educator, advocate, job coach, housing specialist, financial planner, and often, lifelong caregiver. These stories eloquently illustrate those struggles and successes.Grief and Joy: Opposite Sides of the Same Parenting CoinThe idea of grieving a diagnosis is controversial. Many of the writers seemed to feel conflicted about their grief responses and the validity of their feelings. Research shows that many families view the diagnostic process as extremely stressful (Siklos & [End Page 199] Kerns, 2005; Heiman, 2002). Feelings of sadness, anxiety, and depression are common at the point of diagnosis and may reemerge as milestones pass unmet. Families must modify the futures they imagined for their children and begin to envision new goals and dreams. Anonymous Three described this process when she wrote:Most children grow up, go to school, get jobs, move out of their parents’ home, etc. My husband and I have had to seriously consider how much of these are even possible for a young man with autism, even one who has a good number of functional life skills.Tasks of adolescence and adulthood such as starting high school, driving a car, and moving out of the house may be delayed and hard won if met. Raising a child with ASD appears to have particular challenges. Throughout this process, families begin to redefine what “success” means. Rather than ascribing to societal standards, they find joy in personal milestones. McDonald described the triumph of teaching his nephew to shake women’s hands instead of touching their hair, an important safety goal that took three months to accomplish. Each family thereby creates its own path.People outside of the family often do not understand the complicated interplay of love and obligation as well as the frustration and fulfillment that families experience. Just like any family, the parents of children with ASD describe many joys in addition to their struggles. They see their children’s strengths in a world that too often focuses on their weaknesses. Gifted with the everyday experience of their child’s development, they see past the necessity of a... (shrink)