Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

BackgroundDecision-making in initiating life-sustaining health technology is complex and often conducted at time-critical junctures in clinical care. Many of these decisions have profound, often irreversible, consequences for the child and family, as well as potential benefits for functioning, health and quality of life. Yet little is known about what influences these decisions. A systematic review of reasoning identified the range of reasons clinicians give in the literature when initiating technology dependence in a child, and as a result helps determine the (...) range of influences on these decisions.MethodsMedline, EMBASE, CINAHL, PsychINFO, Web of Science, ASSIA and Global Health Library databases were searched to identify all reasons given for the initiation of technology dependence in a child. Each reason was coded as a broad and narrow reason type, and whether it supported or rejected technology dependence.Results53 relevant papers were retained from 1604 publications, containing 116 broad reason types and 383 narrow reason types. These were grouped into broad thematic categories: clinical factors, quality of life factors, moral imperatives and duty and personal values; and whether they supported, rejected or described the initiation of technology dependence. The majority were conceptual or discussion papers, less than a third were empirical studies. Most discussed neonates and focused on end-of-life care.ConclusionsThere is a lack of empirical studies on this topic, scant knowledge about the experience of older children and their families in particular; and little written on choices made outside ‘end-of-life’ care. This review provides a sound basis for empirical research into the important influences on a child’s potential technology dependence. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Although children learn more when teachers gesture, it is not clear how gesture supports learning. Here, we sought to investigate the nature of the memory processes that underlie the observed benefits of gesture on lasting learning. We hypothesized that instruction with gesture might create memory representations that are particularly resistant to interference. We investigated this possibility in a classroom study with 402 second‐ and third‐grade children. Participants received classroom‐level instruction in mathematical equivalence using videos with or without accompanying gesture. After (...) instruction, children solved problems that were either visually similar to the problems that were taught, and consistent with an operational interpretation of the equal sign (interference), or visually distinct from equivalence problems and without an equal sign (control) in order to assess the role of gesture in resisting interference after learning. Gesture facilitated learning, but the effects of gesture and interference varied depending on type of problem being solved and the strategies that children used to solve problems prior to instruction. Some children benefitted from gesture, while others did not. These findings have implications for understanding the mechanisms underlying the beneficial effect of gesture on mathematical learning, revealing that gesture does not work via a general mechanism like enhancing attention or engagement that would apply to children with all forms of prior knowledge. (shrink)

Providing efficient and clean power is a challenge for devices that range from the micro to macro in scale. Although there has been significant progress in the development of micro-, meso-, and macro-scale power supplies and technologies, realization of many devices is limited by the inability of power supplies to scale with the diminishing sizes of CMOS-based technology. Here, the authors provide an overview of piezoelectric energy harvesting technology along with a discussion of proof of concept devices, relevant governing equations, (...) and figures of merit. They present two case studies: (a) energy capture from the operation of a novel shear and elastic modulus indentation device subjected to applied voltage and (b) energy capture from vibrating commercial bimorph piezoelectric structures mounted on household appliances. Lastly, areas of development needed for realization of commercial energy harvesting devices are suggested. (shrink)

The free market theory has as its basis the assumption of equity. This equity is ascribed to both purchasers and providers in a perfectly balanced system so that there are seen to be no 'winners' or 'losers' in the market-place. The health system that is developing in the UK is structured as a managed market, but agency relationships between GPs and health authorities buffer the costing process of goods and therefore may be described as distorting the price. This could also (...) be distorting the ability of the users, who are the real purchasers, from exercising their economic freedom. They may also lose the autonomy to choose goods that suit their particular needs, and equally not to choose those services that they do not want or wish to pay for vicariously (i.e. that the common good is respected by both providers and purchasers). This assumes that users of the service know the level of choice that they have and that not only are providers protected at present by the practices of the purchasers but also entry into the market for new providers is severely curtailed. The exercise of true freedom of the market in economic terms is one of moral obliga tion to provide services that not only have a market value that is affordable and a require ment of the 'common good' but also are historically acceptable for social requirements (i.e. that the services are valued as fundamental tenets of the rights of individuals in soci ety). The expression of this need will therefore be utilitarian (i.e. the users of the services should benefit from them rather than the providers). (shrink)

A dearth of literature focuses on the relationship between acculturation, power distance and liminality for migrant nurses entering foreign workplaces. Expectations are for migrant nurses to be practice‐ready swiftly. However, this aspiration is naïve given the complex shifts that occur in deeply held cultural beliefs and practices and is dependent on an organisational climate of reciprocal willingness to adapt and learn. This exploratory study identified that although a plethora of literature addresses challenges migrant nurses face, there are limited data that (...) link these transitional processes to concepts that might usefully guide transitions. This study draws from the overarching concept of acculturation, together with Hofstede's (2011) notion of power distance and the theory of liminality to explore the experiences of eight migrant nurses. Data highlighted that adjusting to altered hierarchical relationships took many months because negotiating power distance challenged deeply held beliefs and assumptions about professional and organisational hierarchies. Migrant nurses’ accounts indicated a paucity of organisational processes to address these difficulties; therefore, they navigated this liminal space of adjustment to power distance differences in an ad hoc manner. Their acculturation experiences, arguably unnecessarily prolonged, indicate the value in workplace commitment to exploring a collaborative, critically reflective approach to optimise transitions. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

In lieu of an abstract, here is a brief excerpt of the content:240 Feminist Studies 45, no. 1. © 2019 by Mary Anna Evans Mary Anna Evans Personal Continuum The scent of gasoline is neither attractive nor repulsive. It falls somewhere on the continuum between. It is medicinal, but without the acrid bitterness of medicine. It draws children like a drug, but only when their parents aren’t hovering to warn of danger. Adults know about fire and poisoning and (...) long-range carcinogenic doom. Children only know that the odor around gas pumps smells naughty and fun, until their lips open and the flavor of petroleum turns their stomachs. Why do some things smell so much better than they taste? Gasoline, unlike honey, draws humans but not flies. Sarah was not thinking of fire, poisoning, or doom when she fitted the long metal nozzle into the mouth of her car’s fuel tank. She was trying not to think at all, though the customary thoughts slipped in. None of them were about gasoline. The pump’s air pollution control system was working well but not perfectly, so it took a moment for the odor to reach her nose. Her body roused and snarled at her. The baby. What are you thinking? If you breathe those fumes, what will they do to the baby? A moment passed while her body checked itself, remembering what it already knew. There was no baby. Where is the baby? Mary Anna Evans 241 The frantic voice didn’t echo between her ears. It had nothing to do with her brain at all. It was more than thought. It came from a place deeper than thought, and it wasn’t hers. Her body said things she didn’t want to say, and it needed things she didn’t need. Her body wanted things that were not good for her. Again, Where is the baby? And then, the darker question. What did you do? “Nothing,” she said aloud, since there was no one to hear. I didn’t do anything but bleed. I’m still bleeding. She resisted the instinct to clap her hands over her ears to shut out the voice that couldn’t be shut out. Her defiant hold on the nozzle kept her upright. She listened to the rhythmic throb of the pump. Refusing to turn her face from the gasoline’s stench, she opened her mouth and let the fumes seep in. * * * “Hello, sweetheart,” Frederick said as he came in the door. His peck on the cheek didn’t linger, so Sarah knew there would be no more expressions of affection that day. He had read in a self-help book that it was important for couples to use terms of endearment as a form of bonding. Physical displays of affection were important, too, or so said the self-affirmed relationship expert who wrote the book. In public, displays of affection affirmed the pair bond. In private, even a quick smooch forced men and women to secrete an attachment chemical called oxy-whatever. Oh, hell. She was a chemist. She knew what oxytocin was. She was just mystified by the notion of reading a book to find out how to get some. He turned away and went into the kitchen to fetch the marinating chicken. He always grilled when it was his night to cook. She had come to wonder whether modern men were drawn to cook with fire by an ageold hunter instinct, or whether they were attracted to an activity that put a well-insulated exterior wall between them and the women who remained inside to toss the salads. All across America, every warm summer night, lonely women toss salads and hope for romance. His head poked in the back door. “I bought slivered almonds and croutons.” 242 Mary Anna Evans Her “Thanks for remembering, sweetheart,” bounced off the closing door. Shit. She could have spared herself that soulless term of endearment. Leaving the lettuce in the refrigerator, she thrust her soapy hands under warm running water, because even thinking the word “shit” made the idea of handling raw food appalling. Her body, which had forgotten again that she’d lost the baby, approved of her caution. She guarded her thoughts against disturbing its... (shrink)

A leader in the modern commentary on ethics and philosophy, Mary Warnock casts a critical eye over her life and times.

Fundamental principles : the nature of the dispute -- Types of euthanasia -- Psychiatric assisted suicide -- Neonates -- Incompetent adults -- Human life is sacred -- The slippery slope -- Medical views -- Four methods of easing death and their effect on doctors -- Looking further ahead.

How is hope to be found amid the ethical and political dilemmas of modern life? Writer and philosopher Mary Zournazi brought her questions to some of the most thoughtful intellectuals at work today. She discusses "joyful revolt" with Julia Kristeva, the idea of "the rest of the world" with Gayatri Spivak, the "art of living" with Michel Serres, the "carnival of the senses" with Michael Taussig, the relation of hope to passion and to politics with Chantal Mouffe and Ernesto (...) Laclau. A dozen stimulating minds weigh in with their visions of a better social and political order. The result is a collaboration - of writing, of thinking, and of politics - that demonstrates more clearly than any single-authored project could how ideas encountering one another can produce the vision needed for social change. (shrink)

This chapter first distinguishes between originality and creativity. True originality is rare, whether in art, science, or LEGO, because to be truly original means to have done something that no one has ever done before, and that no one could have anticipated. Most LEGO creations will not meet that condition, for with the exception of serious hobbyists who undertake massive builds, most players who make original creations are making creations that are commonplace. Painting or remolding or placing stickers on the (...) bricks counts against the spirit of LEGO creation. The chapter then discusses The LEGO Movie embodies the paradox that presents three conflicting models of creative LEGO play, illustrated by the Master Builders, Finn's father, and Emmet. The movie's creators were deliberately playing around with conflicting popular conceptions of creativity: creativity as madness, creativity as thinking outside the box, and creativity as vision. (shrink)

This selection consists of extracts from writings of women concerned solely with the pursuit of abstract ideas, historically contextualized. The texts, for the most part, reflect issues widely debated in their contemporary societies. Extracts from lesser-known writers are also included, providing a diversity of arguments spanning four centuries and including some notable contemporary philosophers.

For liberal contractarians, moral and political principles are justified if agreeable to persons as free and equals. But for critics of liberal contractarianism, this justification applies only to those capable of agreement. Understanding why contractarianism suffers from the problem of exclusion helps up understand the distinctive character of contractarianism and the importance of agreement in particular. I suggest contractarianism need not be objectionably exclusive. I first consider why agreement is important in contractarianism, and then introduce the main versions of contemporary (...) contractarianism and their different understandings of agreement. I discuss how agreement results in exclusion in each, and distinguish two kinds of response to the problem of exclusion: differential inclusion and permissive inclusion. Differential inclusion is unsuccessful because it offers those not fully capable of agreement unequal status. Permissive inclusion may either make the circumstances of agreement more open, or characterize the capacities required for inclusion more permissively. I advocate the latter as the most promising response to the problem of exclusion. I outline a more inclusive contractualism based on the capacity to share goals. (shrink)

Recent reflection on the professional knowledge of teachers has been marked by a shift away from more reductive competence and skill-focused models of teaching towards a view of teacher expertise as involving complex context-sensitive deliberation and judgement. Much of this shift has been inspired by an Aristotelian conception of practical wisdom (phronesis) also linked by Aristotle to the development of virtue and character. This has in turn led recent educational philosophers and theorists – inspired by latter-day developments in virtue ethics (...) and virtue epistemology – to investigate the contribution of various forms of virtue to the effective practice of teaching. In this light, the present paper undertakes further exploration of the logical geography of virtue, character and practical deliberation in teaching. (shrink)

Nature and Mortality is a challenging look at some of the major public issues of our time through the eyes of one of our most influential and probing liberal humanists. It is a frank account on where we stand today on such controversial matters as human embryology, genetic engineering, euthanasia and abortion. Warnock's views may seem like a red rag to a bull to some, but her contribution to the debate is always stimulating. Enlivened by autobiographical anecdote and some delicious (...) side-swipes, Nature and Mortality is Mary Warnock at her most perceptive, wise and entertaining. (shrink)

The works of Mary Wollstonecraft (1759-1797) ranged from the early _Thoughts on the Education of Daughters_ to _The Female Reader_, a selection of texts for girls, and included two novels. But her reputation is founded on _A Vindication of the Rights of Woman_ of 1792. This treatise is the first great document of feminism—and is now accepted as a core text in western tradition. It is not widely known that the germ of Wollstonecraft’s great work came out of an (...) earlier and much shorter vindication—A Vindication of the Rights of Men (1790), written in the context of the issues raised by the French Revolution. This edition, which follows the model of other Broadview Editions in including a range of materials that help the reader to see the work in the context of its era out of which it emerged, is arranged chronologically, opening with Wollstonecraft’s “other vindication.” It also includes a wide range of other documents in appendices, as well as a comprehensive and authoritative introduction, chronology, and full index. (shrink)

The unity of aesthetic and teleological judgment, the third and earlier Critiques, is based on Kant′s discovery of a “heuristic method” for applying judgments regarding sense phenomena to abstract thought, a “second attention” which enables an “idea of the whole”. Synthetic judgment, basis for cognition and human action, depends on efficacy of non-empirical insights: the transcendental standpoint, “regulative” ideas, consciousness of “ought” and the reality of freedom, universality of natural mechanism, the principle of “fortuitous” purposiveness. The activity of reflective judgment (...) in the encounter with the beautiful, sublime, living, and two paradigmatic types of explanation, inspired by Spinoza′s distinction of extensio and cogitatio, permit Kant to bridge the gap between freedom and necessity, theoretical knowledge and morality. (shrink)

All religion and much philosophy has been concerned with the contrast between the ephemeral and the eternal. Human beings have always sought ways to overcome time, and to prove that death is not the end. This book consists then in an exploration of certain closely related ideas: personal identity, time, history and our commitment to the future, and the role of imagination in life.

Scientific culture in Europe and the refugee generation -- Germany and Weimar Berlin as the City of Science -- Origins of a social perspective: doing physical chemistry in Weimar Berlin -- Chemical dynamics and social dynamics in Berlin and Manchester -- Liberalism and the economic foundations of the "Republic of Science" -- Scientific freedom and the social functions of science -- Political foundations of the philosophies of science of Popper, Kuhn, and Polanyi -- Personal knowledge: argument, audiences, and sociological engagement (...) -- Epilogue: SSK, scientific constructivism, and the paradoxical legacy of Polanyi and the 1930s generation. (shrink)