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)

Multiculturalism and “The Politics of Recognition.” An Essay by Charles Taylor with commentary by Amy Gutmann, editor, Steven C. Rockefeller, Michael Walzer, and Susan Wolf.

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)

Ethical climate (EC) has been broadly described as how well institutions respond to ethical issues. Developing a tool to study and evaluate EC that aims to achieve sustained improvements requires a contemporary framework with identified relevant drivers. An extensive literature review was performed, reviewing existing EC definitions, tools and areas where EC has been studied; ethical challenges and relevance of EC in contemporary paediatric intensive care (PIC); and relevant ethical theories. We surmised that existing EC definitions and tools designed to (...) measure it fail to capture nuances of the PIC environment, and sought to address existing gaps by developing an EC framework for PIC founded on ethical theory. In this article, we propose a Paediatric Intensive Care Ethical Climate (PICEC) conceptual framework and four measurable domains to be captured by an assessment tool. We define PICEC as the collective felt experience of interdisciplinary team members arising from those factors that enable or constrain their ability to navigate ethical aspects of their work. PICEC both results from and is influenced by how well ethical issues are understood, identified, explored, reflected on, responded to and addressed in the workplace. PICEC encompasses four, core inter-related domains representing drivers of EC including: (1) organisational culture and leadership; (2) interdisciplinary team relationships and dynamics; (3) integrated child and family-centred care; and (4) ethics literacy. Future directions involve developing a PICEC measurement tool, with implications for benchmarking as well as guidance for, and evaluation of, targeted interventions to foster a healthy EC. (shrink)

Do continuing education (CE) mandates increase participation in ethics programs and enhance their perceived outcomes? In a study of 5,198 North American psychologists, significant differences were found between mandated and nonmandated psychologists in relation to their participation in ethics programs but not in the perceived outcomes associated with those trainings. Although 64.3% of those psychologists operating under ethics mandates reported completing at least one ethics training within the previous year, only 40.7% of those without such mandates reported doing likewise. Overall, (...) both groups tended to view their ethics training quite favorably in relation to its perceived outcomes, though they differed in relation to their endorsement of CE mandates. Results are discussed in relation to the ongoing development of evidence-based CE and its role in developing critical professional competencies. (shrink)

Watson begins with two questions: “Should the need for abortion care be considered a health disparity? and, “If yes, would framing it this way increase the ability of poor women and women of color...

The nurse perspective is critical in survey research investigating various aspects of healthcare services, staff, and patient outcomes. Researchers are responsible for ensuring that survey research utilizing survey questionnaires employs research methodological strategies that are aligned with the ethical principles of beneficence, respect for persons, and justice. The purpose of this paper is to discuss best practices to facilitate high-quality survey data collection for nurse survey participants. Recommendations are based on the fundamental ethical principles described in the Belmont Report, an (...) overview of evidence published in the current literature, and the application of practical knowledge. Literature searches conducted in PubMed resulted in the inclusion of over 50 articles from a wide range of disciplines. The results include actionable methods for researchers to consider and follow when conducting survey research utilizing nurse participants. This article serves as a resource to guide researchers through ethically responsible design, implementation, and reporting of nurse survey research. (shrink)

A collection of five essays in which the religious experiences and activities of individuals, communities, and cultures are seen as preeminently rational responses to reality. Of interest to students and scholars of technology and philosophy.

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 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)

Attentional control has grown in importance within theoretical and predictive models of psychopathology over past decades. The Attentional Style Questionnaire is a novel measure of internal a...

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)

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)

Using the thought of Italian philosopher Robert Esposito, Taylor M. Weaver provides a new reading of Pauline community.

Transgender inclusion within policy is critical yet often missing. We propose a policy tool to assesses human rights, access to resources and opportunities, language, and implications for transgender and nonbinary individuals. Acknowledging trans communities as standard policy practice can serve as an essential practice to shift dialogue and norms.

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)

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)

Open-mindedness is widely valued as an important intellectual virtue. Definitional debates about open-mindedness have focused on whether open-minded believers must possess a particular first-order attitude toward their beliefs or a second-order attitude toward themselves as believers, taking it for granted that open-mindedness is motivated by the pursuit of propositional knowledge. In this article, Rebecca Taylor develops an alternative to knowledge-centered accounts of open-mindedness. Drawing on recent work in epistemology that reclaims understanding as a primary epistemic good, Taylor argues (...) for an expanded account of open-mindedness as an intellectual virtue motivated by the pursuit of both knowledge and understanding. Incorporating understanding allows for a more robust account of open-mindedness that better accommodates common usage, avoids common criticisms, and better explains the widespread acceptance of open-mindedness as an important intellectual virtue. Taylor also identifies the connections between open-mindedness and several other intellectual virtues, including intellectual humility, intellectual courage, and intellectual diligence. (shrink)

Debates about indoctrination raise fundamental questions about the ethics of teaching. This paper presents a philosophical analysis of indoctrination, including 1) an account of what indoctrination is and why it is harmful, and 2) a framework for understanding the responsibilities of teachers and other educational actors to avoid its negative outcomes. I respond to prominent outcomes-based accounts of indoctrination, which I argue share two limiting features—a narrow focus on the threat indoctrination poses to knowledge and on the dyadic relationship between (...) indoctrinator and indoctrinated person. I propose a system-based account of indoctrination in which actors with authority contribute to the production or reinforcement of closed-mindedness, which threatens both knowledge and understanding. By taking a system-based approach, my account is better equipped to identify the implications of indoctrination for educational policy and practice. (shrink)