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)

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)

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)

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)

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)

This paper argues that professionals who make boundary-related decisions should be guided by relationship-based practice. In our roles as service users and professionals, drawing from our lived experiences of professional relationships, we argue we need to move away from distance-based practice. This includes understanding the boundary stories and narratives that exist for all of us – including the people we support, other professionals, as well as the organisations and systems within which we work. When we are dealing with professional boundary (...) issues, we should centre relationship-building skills that are central to many other aspects of our work. Skills that foster relationships at all levels – between professionals, service users, and services – need to be revalued. Our final recommendation is to create, develop, and foster safer spaces within and outside of organisations, as well as inter-professionally, for the discussion and exploration of boundary-related issues and practice. We are interested in hearing from those with experiences of being marginalised by boundaries so that they can inform a reshaping of our collective ideas around boundary related practices. To foster relationship-based practices in organisations, we have outlined several recommendations here; however, we recognize that these do not go far enough, and that collective action is needed to inform systemic change. (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)

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)

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.

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.

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)

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)

This book updates and adds to the classic Social Movements of the Sixties and Seventies, showing how social movement theory has grown and changed.

This paper reviews the AWARE(TM) software distributed by the Electric Power Research Institute (EPRI). The program is designed to facilitate the Federal Energy Regulatory Commission (FERC) license renewal process for US hydropower installations. The discussion reviews the regulatory, legal, and social contexts that give rise to the creation and distribution of AWARE(TM). The principal legal impetus for AWARE(TM) is the Electric Consumer Protection Act (ECPA) of 1986 that directs FERC to give equal consideration to power and non-power resources during relicensing. (...) The software is reviewed in this paper from several perspectives including those of natural resource economics, systems modeling, and the social context within which FERC licensing decisions are made. We examine both the software and its underlying methodology and find significant problems with each. Because of its flaws, AWARE(TM) does little to further ECPA's equal consideration requirement. We find that the conservation and restoration impact of ECPA for US fisheries could be seriously hampered by the widespread use of AWARE(TM). (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)

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)

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)