Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

BackgroundMulti-centre studies generally cost more than single-centre studies because of larger sample sizes and the need for multiple ethical approvals. Multi-centre studies include clinical trials, clinical quality registries, observational studies and implementation studies. We examined the costs of two large Australian multi-centre studies in obtaining ethical and site-specific approvals.MethodsWe collected data on staff time spent on approvals and expressed the overall cost as a percent of the total budget.ResultsThe total costs of gaining approval were 38 % of the budget for (...) a study of 50 centres (mean cost AUD $6960 per site) and 2 % for a study of 11 centres (mean cost AUD $2300 per site). Seventy-five and 90 % of time was spent on repeated tasks, respectively, and many time-consuming tasks, such as reformatting documents, did nothing to improve the study design or participant safety.ConclusionsImprovements have been made to the ethical approval application system, but more gains could be made without increasing risks of harm to research participants. We propose that ethical review bodies and individual sites publish statistics on how long they take to process approvals which could then be nationally benchmarked. (shrink)

Molly is just a unique little girl who likes what she likes. But if she were concerned about the way Disney portrays women, she would do well to consider The Little Mermaid. Ariel represents a major step forward from Snow White. Ariel's treasure trove is full of dinglehoppers and snarfblats, but once she lays eyes on Prince Eric, the young man is the prize she wants most. When the Prince's ship splits, The Little Mermaid flips the script. For all her (...) shortcomings from a feminist perspective, unruly Ariel represents a move in the right direction. The Little Mermaid does not belong in the hall of shame, like Song of the South. Adolescent Ariel sings and leads a viewing public into a new, fresh take on Disney princesses, with a voice reminding everyone to be assertive, speak their minds, and do what they want to do. (shrink)

Thirty years after Lewis's paper, this book brings together some of the most important recent work connecting—or, in some cases, disputing the connection ...

Among the many philosophers who hold that causal facts1 are to be explained in terms of—or more ambitiously, shown to reduce to—facts about what happens, together with facts about the fundamental laws that govern what happens, the clear favorite is an approach that sees counterfactual dependence as the key to such explanation or reduction. The paradigm examples of causation, so advocates of this approach tell us, are examples in which events c and e— the cause and its effect— both occur, (...) but: had c not occurred, e would not have occurred either. From this starting point ideas proliferate in a vast profusion. But the remarkable disparity among these ideas should not obscure their common foundation. Neither should the diversity of opinion about the prospects for a philosophical analysis of causation obscure their importance. For even those philosophers who see these prospects as dim—perhaps because they suffer post-Quinean queasiness at the thought of any analysis of any concept of interest—can often be heard to say such things as that causal relations among events are somehow “a matter of” the patterns of counterfactual dependence to be found in them. (shrink)

The emergence of large-scale social media systems, such as Wikipedia, Facebook, and Twitter, has given rise to a new multi-disciplinary effort based around the concept of social machines. For the most part, this research effort has limited its attention to the study of Web-based systems. It has also, perhaps unsurprisingly, tended to highlight the social scientific relevance of such systems. The present paper seeks to expand the scope of the social machine research effort to encompass the Internet of Things. One (...) advantage of this expansion is that it helps to reveal some of the links between the science of social machines and the sciences of the mind. A second advantage is that it furthers our conceptual understanding of social machines and supports the quest to derive a philosophically-robust definition of the term “social machine.” The results of the present analysis suggest that social machines are best conceived as systems in which a combination of social and technological elements play a role in the mechanistic realization of system-level phenomena. The analysis also highlights the relevance of cognitive science and the philosophy of mind to our general understanding of systems that transcend the cyber, physical, and social domains. (shrink)

Changes in healthcare financing increasingly rely upon patient cost-sharing to control escalating healthcare expenditures. These changes raise new challenges for physicians that are different from those that arose either under managed care or traditional indemnity insurance. Historically, there have been two distinct bases for arguing that physicians should not consider costs in their clinical decisions—an “aspirational ethic” that exhorts physicians to treat all patients the same regardless of their ability to pay, and an “agency ethic” that calls on physicians to (...) be trustworthy advisors to their patients. In the setting of greater patient cost-sharing, physicians' aspiration and agency roles increasingly conflict. Satisfactorily navigating the new terrain of consumer-driven healthcare requires physicians to consider these two roles and how they can best be reconciled so as to maximize quality of care while respecting the heterogeneity of patients' financial resources and willingness to pay. (shrink)

This study delves into the intricate world of tipping, examining how restaurant chefs and chef-owners account for and morally justify this practice. While previous research has paved the way for understanding several of the nuances of tipping in the dining experience, little attention has been given to chefs’ perspectives on its moral dimensions. In today’s evolving restaurant dining landscape, tipping practices have become increasingly contentious. Therefore, it is imperative to grasp the ethical intricacies of tipping experiences, as they hold significant (...) implications for social and economic interactions. This study focuses on interviews with culinary artisans—the masterminds behind the dining experience, including executive chefs, chef-owners, sous chefs, chefs de cuisine, private chefs, and pop-up chefs. Through these conversations, we explore the moral justifications for tipping, unintended consequences that arise, and the advent of tip coercion. Our findings shed light on the moral reasoning and ethical dynamics behind tipping practices. These findings offer a foundation for shaping theoretical frameworks, informing practical solutions, and guiding policy decisions in this complex realm. (shrink)

Due to the prevalence, severity, and costs associated with autism spectrum disorders, it has become a public health issue. In response, state governments have adopted ASD-specific private insurance mandates requiring coverage of ASD screening, diagnosis, and treatment. Despite rapid uptake of these laws, differences exist in the type and levels of coverage, especially for allied health services including occupational therapy. We piloted a structured legal research methodology to code ASD insurance mandates that impact allied health service provisions. State private insurance (...) mandates were obtained from WestlawNext. A coding methodology was piloted on 14 states and included variables for age and service limits, treatments covered, and medical necessity. Coding methods were feasible and highly reliable among raters. Ten of 12 states had a coverage mandate, many with specific provisions for allied health providers. A full analysis of all 50 states is warranted to identify provisions affecting allied health providers serving individuals with ASD. (shrink)

Given their salience in many sports and physical cultures, it is surprising that the practices, processes and production of intercorporeality and ‘doing together’ remain under-explored from a sociological perspective. The ongoing achievement of ‘togethering’ can be particularly important for the embodied partnership between a visually impaired (VI) runner and a sighted guide (SG) runner: a specific sporting dyad whose experiences are currently under-researched. To address this lacuna and contribute original insights to sensory sociological studies, here we explore the accomplishment of (...) running-together by VI runners and sighted guides, focusing on the auditory dimension. To illustrate how these runners put the sense of hearing ‘to work’ in achieving finely attuned intercorporeality, often at considerable speed, we draw on qualitative data from a research project on VI running in the UK, involving five VI runners and five SGs. Here, we focus on auditory attunement in two domains identified as highly salient in the running-partners’ intercorporeal experiences: (1) Listening out – auditory attention to non-linguistic sounds; and (2) Tuning in – the importance of attending to team-talk between VI runners and SG runners. (shrink)

Developments in the field of neuroscience, according to its proponents, offer the prospect of an enhanced understanding and treatment of addicted persons. Consequently, its advocates consider that improving public understanding of addiction neuroscience is a desirable aim. Those critical of neuroscientific approaches, however, charge that it is a totalising, reductive perspective–one that ignores other known causes in favour of neurobiological explanations. Sociologist Nikolas Rose has argued that neuroscience, and its associated technologies, are coming to dominate cultural models to the extent (...) that 'we' increasingly understand ourselves as 'neurochemical selves'. Drawing on 55 qualitative interviews conducted with members of the Australian public residing in the Greater Brisbane area, we challenge both the 'expectational discourses' of neuroscientists and the criticisms of its detractors. Members of the public accepted multiple perspectives on the causes of addiction, including some elements of neurobiological explanations. Their discussions of addiction drew upon a broad range of philosophical, sociological, anthropological, psychological and neurobiological vocabularies, suggesting that they synthesised newer technical understandings, such as that offered by neuroscience, with older ones. Holding conceptual models that acknowledge the complexity of addiction aetiology into which new information is incorporated suggests that the impact of neuroscientific discourse in directing the public's beliefs about addiction is likely to be more limited than proponents or opponents of neuroscience expect. (shrink)

Aim This study is a systematic review that aims to assess how healthcare professionals manage ethical challenges regarding information within the clinical context.Method and Materials We carried out searches in PubMed, Google Scholar and Embase, using two search strings; searches generated 665 hits. After screening, 47 articles relevant to the study aim were selected for review. Seven articles were identified through snowballing, and 18 others were included following a system update in PubMed, bringing the total number of articles reviewed to (...) 72. We used a Q-sort technique for the analysis of identified articles.Findings This study reveals that healthcare professionals around the world generally employ (to varying degrees) four broad strategies to manage different types of challenges regarding information, which can be categorized as challenges related to confidentiality, communication, professional duty, and decision-making. The strategies employed for managing these challenges include resolution, consultation, stalling, and disclosure/concealment.Conclusion There are a variety of strategies which health professionals can adopt to address challenges regarding information management within the clinical context. This insight complements current efforts aimed at enhancing health professional-patient communication. Very few studies have researched the results of employing these various strategies. Future empirical studies are required to address this. (shrink)

The diagnosis of Fetal Alcohol Spectrum Disorders is embedded in a matrix of biological, social and ethical processes, making it an important topic for crossdisciplinary social and ethical research. This article reviews different branches of research relevant to understanding how FASD is identified and defined and outlines a framework for future social and ethical research in this area. We outline the character of scientific research into FASD, epidemiological discrepancies between reported patterns of maternal alcohol consumption during pregnancy and the incidence (...) of FASD, and the social and ethical considerations that may impact on who is, and is not, diagnosed. We highlight what further research investigating FASD diagnostic processes, as well as the multi-generational impacts of FASD, is needed. Important research priorities are to: 1) enumerate the variety of stakeholders involved in seeking FASD diagnoses; 2) understand the experiences and perspectives of mothers from different backgrounds who have consumed alcohol during pregnancy and their affected children; and 3) collect health histories of maternal alcohol consumption in families to determine the effect of FASD at sub-cultural and cultural levels. (shrink)

John C. Hall; III—Quantity of Pleasure, Proceedings of the Aristotelian Society, Volume 67, Issue 1, 1 June 1967, Pages 35–52, https://doi.org/10.1093/aristotel.

We explain libertarian thought about family and children, including controversial issues in need of serious attention. To begin our discussion of marriage, we distinguish between procedural and substantive contractarian approaches to marriage, each endorsed by various libertarians. Advocates of both approaches agree that it is a contract that makes a marriage, not a license, but disagree about whether there are moral limits to the substance of the contract with only advocates of the substantive approach accepting such. Either approach, though, offers (...) advantages over the current licensing system, so we discuss paths from that to a contractarian system. We also discuss the concept of marriage itself, the ages of consent for marriage, sexual activity, and reproduction, as well as how marriages can be dissolved, and coercion that sometimes occurs in marriage. We then turn to children. We first discuss reproductive freedom and then discuss the moral relationship between children and parents, especially considering stewardship, propertarian, and best interests approaches (we also touch on anti-natalism). One of the biggest issues facing parents is how to properly raise and educate children; we discuss this in depth and consider the sort of schooling that should be offered in a free society. Since children lack the requisite ability to consent, they cannot choose their education; how to respond to this is of the utmost importance for libertarians. As we note, the same issue of consent looms large for many forms medical treatment of children. (shrink)

We explain libertarian thought about family and children, including controversial issues in need of serious attention. To begin our discussion of marriage, we distinguish between procedural and substantive contractarian approaches to marriage, each endorsed by various libertarians. Advocates of both approaches agree that it is a contract that makes a marriage, not a license, but disagree about whether there are moral limits to the substance of the contract with only advocates of the substantive approach accepting such. Either approach, though, offers (...) advantages over the current licensing system, so we discuss paths from that to a contractarian system. We also discuss the concept of marriage itself, the ages of consent for marriage, sexual activity, and reproduction, as well as how marriages can be dissolved, and coercion that sometimes occurs in marriage. We then turn to children. We first discuss reproductive freedom and then discuss the moral relationship between children and parents, especially considering stewardship, propertarian, and best interests approaches (we also touch on anti-natalism). One of the biggest issues facing parents is how to properly raise and educate children; we discuss this in depth and consider the sort of schooling that should be offered in a free society. Since children lack the requisite ability to consent, they cannot choose their education; how to respond to this is of the utmost importance for libertarians. As we note, the same issue of consent looms large for many forms medical treatment of children. (shrink)

The early literature on base of the pyramid strategies argued that multinational enterprises can contribute significantly to poverty alleviation of the poorest population in the world. An emergent perspective suggests that the solution to poverty lies within the BOP itself. Here, entrepreneurship within the BOP population is seen as the more credible solution to poverty. In this Special Issue introduction, we briefly present how the literature has further shifted the discussion of BOP strategies toward issues such as innovation, networks, business (...) models, and sustainability at the BOP. This analysis signals a gap in our knowledge related to the success factors in business models of BOP entrepreneurs, with attention to economic, social, and environmental impacts. We present the five articles accepted for publication in this Special Issue, of which three contribute to our knowledge of BOP business models and two to our knowledge of sustainability at the BOP. In conclusion, we propose several avenues for future research. (shrink)

Experiments on choice blindness support von Hippel & Trivers's (VH&T's) conception of the mind as fundamentally divided, but they also highlight a problem for VH&T's idea of non-conscious self-deception: If I try to trick you into believing that I have a certain preference, and the best way is to also trick myself, I might actually end up having that preference, at all levels of processing.

Currently, the common theoretical models of "preferred" decision-making relationships do not correspond well with clinical experience. This interview study of congestive heart failure (CHF) patients documents the variety of patient preferences for decision-making, and the necessity for attention to family involvement. In addition, these findings illustrate the confusion as to the designation of surrogate decision-makers and physicians in charge. We conclude that no single model of physician-patient decision-making should be preferred, and that physicians should first ask patients how they want (...) medical information and decision-making to be handled. (shrink)

BackgroundClinical trials should be as inclusive as possible to facilitate equitable access to research and better reflect the population towards which any intervention is aimed. Informed by the UK’s National Institute for Health and Care Research (NIHR) Innovations in Clinical Trial Design and Delivery for the Under-served (INCLUDE) guidance, we audited oncology trials conducted by the Clinical Trials and Statistics Unit at The Institute of Cancer Research, London (ICR-CTSU) to identify whether essential documents were overtly excluding any groups and whether (...) sufficient data were collected to assess diversity of trial participants from groups suggested by INCLUDE as under-served by research in the UK.MethodsThirty cancer clinical trials managed by ICR-CTSU and approved between 2011–2021 were audited. The first ethics approved version of each trial’s protocol, patient information sheet, and patient completed questionnaire, together with the first case report forms (CRFs) version were reviewed. A range of items aligned with the INCLUDE under-served groups were assessed, including age, sex and gender, socio-economic and health factors. The scope did not cover trial processes in participating hospitals.ResultsData relating to participants’ age, ethnic group and health status were well collected and no upper age limit was specified in any trials’ eligibility criteria. 23/30 (77%) information sheets used at least one gendered term to address patients. Most CRFs did not specify whether they were collecting sex or gender and only included male or female categories. The median reading age for information sheets was 15–16 years (IQR: 14–15 – 16–17). Socio-economic factors were not routinely collected and not commonly mentioned in trial protocols.ConclusionsNo systemic issues were identified in protocols which would explicitly prevent any under-served group from participating. Areas for improvement include reducing use of gendered words and improving readability of patient information. The challenge of fully assessing adequate inclusion of under-served populations remains, as socio-economic factors are not routinely collected because they fall beyond the data generally required for protocol-specified trial endpoint assessments. This audit has highlighted the need to agree and standardise demographic data collection to permit adequate monitoring of the under-served groups identified by the NIHR. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and even (...) predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

Futile treatment. Do not resuscitate. These terms and the thoughts they evoke may be unfamiliar to families with ill children. Similarly, laws, such as the Americans with Disabilities Act or the Emergency Medical Treatment and Active Labor Act, are probably unfamiliar. Yet these terms and laws, and, more important, their implications, are part of a new world of health care into which more families are thrust—the world of wrenching and complicated decisions.Although the number of these situations is increasing and even (...) predictable, the infrastructure of support services for families dealing with these medical decisions for seriously ill children has not been adequately addressed or developed. Parents know that some children are born with or develop serious illnesses and die. Amid absorbing large amounts of new information and interpreting the parameters and implications of what they are learning about their child's condition, families are forced by circumstances to assess—and to act on—their most critical, and perhaps previously unexamined, values. (shrink)

This paper asks whether geographically localised, or ‘hyperlocal’, uses of Twitter succeed in creating peer-to-peer neighbourhood networks or simply act as broadcast media at a reduced scale. Literature drawn from the smart cities discourse and from a UK research project into hyperlocal media, respectively, take on these two opposing interpretations. Evidence gathered in the case study presented here is consistent with the latter, and on this basis we criticise the notion that hyperlocal social media can be seen as a community (...) in itself. We demonstrate this by creating a network map of Twitter followers of a popular hyperlocal blog in Brockley, southeast London. We describe various attributes of this network including its average degree and clustering coefficient to suggest that a small and highly connected cluster of visible local entities such as businesses form a clique at the centre of this network, with individual residents following these but not one another. We then plot the locations of these entities and demonstrate that sub-communities in the network are formed due to close geographical proximity between smaller sets of businesses. These observations are illustrated with qualitative evidence from interviews with users who suggest instead that rather than being connected to one another they benefit from what has been described as ‘neighbourhood storytelling’. Despite the limitations of working with Twitter data, we propose that this multi-modal approach offers a valuable way to investigate the experience of using social media as a communication tool in urban neighbourhoods. (shrink)

Interest in NFIB v. Sebelius has been extraordinarily high, from as soon as the legislation was passed, through lower court rulings, the Supreme Court’s grant of certiorari, and the decision itself, both for its substantive holdings and the purported behind-the-scene dynamics. Legal blogs exploded with analysis, bioethicists opined on our collective responsibilities, and philosophers tackled concepts like ‘coercion’ and the activity/inactivity distinction. This volume aims to bring together scholars from disparate fields to analyze various features of the decision. It comprises (...) over twenty essays from a range of academic disciplines, namely law, philosophy, and political science. Essays are divided into five units: context and history, analyzing the opinions, individual liberty, Medicaid, and future implications. (shrink)

Roland Hall; X—Conceptual Reform—One Task of Philosophy, Proceedings of the Aristotelian Society, Volume 61, Issue 1, 1 June 1961, Pages 169–188, https://doi.or.

Hall discusses the ideas of modern day legal philosophers such as Duguit, Geny, Ehrlich, & Kelsen, & what their conceptions mean to a democratic society.

In this paper, we discuss our approach to developing engaging course content linked to distinct learning outcomes on the topic of academic authorship. Academic authorship is a critical element of research culture and responsible conduct of research (RCR) courses. Drawing on instructional design methods, our online course aims to stimulate critical thinking about ethical authorship practices and to help students develop skills for resolving authorship-related conflicts. The course is scaffolded to facilitate engagement by tying video and podcast-style media, a choice-based (...) interactive simulation, and traditional case study activities, to specific learning objectives. We describe how each instructional technique enhances student engagement and learning for the paired objective, and the benefits of the holistic course design. Finally, we illustrate how RCR instructors can incorporate our materials in full or in part into their own course curricula and encourage others to use our course development approach when designing their own courses. (shrink)

We synthesize literature from organization theory and political sociology to develop a conceptual lens from which organizing can be examined as a process whereby institutional structures are changed in ways similar to how social movements change entire societies. Implied is that hegemonic power structures maintain existing institutional structures by either resisting insurgencies or by making them seem senseless in the first place.

We study statements about countable and well-ordered unions and their relation to each other and to countable and well-ordered forms of the axiom of choice. Using WO as an abbreviation for “well-orderable”, here are two typical results: The assertion that every WO family of countable sets has a WO union does not imply that every countable family of WO sets has a WO union; the axiom of choice for WO families of WO sets does not imply that the countable union (...) of countable sets is WO. (shrink)

Alexander W. Hall - Demonstration and Scientific Knowledge in William of Ockham: A Translation of Summa Logicae III-II: De Syllogismo Demonstrativo, and Selections from the Prologue to the Ordinatio - Journal of the History of Philosophy 46:1 Journal of the History of Philosophy 46.1 170-172 Muse Search Journals This Journal Contents Reviewed by Alexander W. Hall Clayton State University John Lee Longeway, translator. Demonstration and Scientific Knowledge in William of Ockham: A Translation of Summa Logicae III–II: De Syllogismo (...) Demonstrativo, and Selections from the Prologue to the Ordinatio. Notre Dame, IN: University of Notre Dame Press, 2007. Pp. xx + 432. Cloth, $58.00. William of Ockham never delivered his promised exposition of Posterior Analytics. In its place, we have Summa Logicae III–II, and the Prologue to his Ordinatio... (shrink)

This essay explicates a structural theory of the historical evolution of world-systems. Rather than using societies as the unit of analysis the authors use intersocietal interaction networks (world-systems). This enables them to take theoretical account of the systemic development processes that are regional and inter-regional in scope and to formulate a more powerful theory that explains how thousands of egalitarian small-scale world-systems evolved, expanded and merged to become the hierarchical and global world-system of today.

ABSTRACT This article considers three kinds of relations: being-there-alongside, waiting, and staying, that come into focus at or after the end of life. The first relation is explored in light of Heidegger’s and Levinas’s contrasting accounts of responsibility, the second in terms of Bergson’s notion of hesitation, and the third in relation to Winnicott’s description of a “holding environment.” The work serves as a plea for spaces and practices that support more generous, open-ended, and nuanced relations among those who are (...) dying and those who attend to and survive them. (shrink)