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.

In the dissertation I provide an account of action descriptions which emphasizes their role as explanations of consequences. By showing that consequences are ascribed to an action under a description, and only when that description can explain the consequence, I undermine the view that consequences are brute events. Roughly, I reason as follows. If consequences were brute events, then their ascription to an action wouldn't hinge on how we understand the action. We could, for instance, say in ordinary circumstances "John (...) tensed his finger" and as a consequence "Mary became a widow" without any untowardness at all. I show both that we do not do this and that we cannot do it. That we do not do it is supported primarily by linguistic intuitions; mainly I show that there is an infelicity in ascribing to an action a consequence which is not explained by that action. To support the claim that we cannot do this I argue that if there were no "fit" between action and consequence that would make communication difficult. ;I then use this characterization of action descriptions and consequences to serve as a criterion for identifying the privileged description of an action. Any one action may have several action descriptions. In light of this, there is a question raised about which, if any, of these descriptions is privileged. I show that within the wider social context there is a description of the action which is dominant. Then I argue that this description is and should be chosen in virtue of the explanatory power of action descriptions with respect to consequences. (shrink)

A collection of essays on the human genome, European patent law, cloning, and genetic malpractice suits.

Illustrating the collective power and relevance of feminist theory today, Mary Caputi and Patricia Moynagh have carefully selected a diverse international range of leading scholars and activists to critically assess key social and political challenges in the twenty-first century. This Research Handbook demonstrates a variety of feminist analyses that offer compelling insights into an array of topics, including police brutality, the carceral state, racial and sexualised violence, trans rights, climate change, and the denial of reproductive rights. With a focus (...) on the crucial role of feminism in envisioning a more equal world, chapters examine critical and care based approaches to feminist political thought; hostility to the feminist movement; and feminist attempts to unseat institutionalised power and violence. The lived experiences of women, variously situated in a host of cultural and geographic contexts, are explored. These experiences include the thematics of longing and bereavement, as well as different forms of feminist protest and political awakening. Ultimately, this Research Handbook illustrates the continuing need for reinterpretation and reconstruction in this vital field of feminist political thought. The Research Handbook on Feminist Political Thought will prove an essential read for students and scholars of feminist, political and postcolonial theory. Its real-world implications will mean it will additionally appeal to policymakers and activists, as well as academics of philosophy, political science, sociology, and gender and cultural studies. (shrink)

Desire After Affect offers a detailed analysis of the affective turn and its consequences for the humanities.

In an age where digital images are omnipresent, the use of participant photography in qualitative research has become accessible and commonplace. Yet, scant attention is paid to the social justice impact of photovoice amongst studies that have used this innovative method as a way to promote social justice. There is a need to review this method to understand its contributions and possibilities. This literature review of photovoice research studies (i) explores whether authors implicitly or explicitly related the methodologies to their (...) aims of promoting social justice (methodology–method fit) and (ii) outlines the social justice research impact of photovoice findings using the framework of social justice awareness, amelioration and transformation. PubMed, Scopus, PsycINFO and Web of Science databases were searched from the years 2008–13 using the following keywords: photovoice; photonovella; photovoice and social justice; and photovoice and participatory action research. Of the 30 research studies reviewed, only thirteen identified an underlying methodology guiding the photovoice method. The social justice impacts emphasized were more related to social justice awareness (n = 30) than amelioration (n = 11) or transformation (n = 3). Future researchers using photovoice as a way to promote social justice are encouraged to assess and plan for the social justice impact desired. (shrink)

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

To revitalize nursing science, there is a need for a new approach to guide nurse scientists in addressing complex problems in health care. By applying theoretical concepts from a revolutionary philosopher of science, Paul K. Feyerabend, new nursing knowledge can be produced using creativity and pluralistic approaches. Feyerabend proposed that methods within and outside of science can produce knowledge. Despite the recognition of Feyerabendian philosophy within science, there is currently a lack of literature regarding the relevance of Feyerabendian philosophy for (...) nursing science. We aim to (a) describe and critique Feyerabendian concepts, (b) discuss the potential application of Feyerabendian philosophy for knowledge production within gerontological nursing and (c) describe theoretical possibilities for nurse scientists in using Feyerabendian philosophy to guide nursing knowledge development. We begin by introducing Feyerabend's life and his inspirations for his theoretical concepts, epistemological anarchism, theoretical pluralism and humanitarianism, and conclude by offering suggestions of how to apply Feyerabendian philosophy in nursing research. (shrink)

God, Sex, Science, Gender: An Interdisciplinary Approach to Christian Ethics is a timely, wide-ranging attempt to rescue dialogues on human sexuality, sexual diversity, and gender from insular exchanges based primarily on biblical scholarship and denominational ideology. Too often, dialogues on sexuality and gender devolve into the repetition of party lines and defensive postures, without considering the interdisciplinary body of scholarly research on this complex subject. This volume expands beyond the usual parameters, opening the discussion to scholars in the humanities, social (...) sciences, and natural sciences to foster the development of Christian sexual ethics for contemporary times. Essays by prominent and emerging scholars in the fields of anthropology, sociology, psychology, philosophy, literary studies, theology, and ethics reveal how faith and reason can illuminate our understanding of human sexual and gender diversity. Focusing on the intersection of theology and science and incorporating feminist theory, God, Sex, Science, Gender is a much-needed call for Christian ethicists to map the origins and full range of human sexual experience and gender identity. Essays delve into why human sexuality and gender can be so controversial in Christian contexts, investigate the complexity of sexuality in humans and other species, and reveal the implications of diversity for Christian moral theology. Contributors are Joel Brown, James Calcagno, Francis J. Catania, Pamela L. Caughie, Robin Colburn, Robert Di Vito, Terry Grande, Frank Fennell, Anne E. Figert, Patricia Beattie Jung, Fred Kniss, John McCarthy, Jon Nilson, Stephen J. Pope, Susan A. Ross, Joan Roughgarden, and Aana Marie Vigen. (shrink)

Canadian and American population-based research concerning sexual and/or gender minority populations provides evidence of persistent breast and gynecologic cancer-related health disparities and knowledge divides. The Cancer's Margins research investigates the complex intersections of sexual and/or gender marginality and incommensurabilities and improvisation in engagements with biographical and biomedical cancer knowledge. The study examines how sexuality and gender are intersectionally constitutive of complex biopolitical mappings of cancer health knowledge that shape knowledge access and its mobilization in health and treatment decision-making. Interviews were (...) conducted with a diverse group of sexual and/or gender minority breast or gynecologic cancer patients. The LGBQ//T2 cancer patient narratives we have analyzed document in fine grain detail how it is that sexual and/or gender minority cancer patients punctuate the otherwise lockstep assemblage of their cancer treatment decision-making with a persistent engagement in creative attempts to resist, thwart and otherwise manage the possibility of discrimination and likewise, the probability of institutional erasure in care settings. Our findings illustrate the demands that cancer places on LGBQ//T2 patients to choreograph access to, and mobilization of knowledge and care, across significantly distinct and sometimes incommensurable systems of knowledge. (shrink)

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)

Bibliografie met commentaar per rubriek: feminisme/vrouwenbeweging, werkomstandigheden, gezondheidszorg, geweld/criminaliteit, recht/politiek, literatuur/kunst, sociaal-psychologische perspectieven etc.

Bioethics, clinical ethics, and professional ethics are mature, well-developed fields of applied ethics that focus on medical research, patient autonomy and patient care, patient–healthcare professional relationships, and issues that arise in clinical and other medical settings. However, despite these developments, little attention has been paid to the organizational aspects of healthcare in these fields. This is surprising, because in the last 30 years healthcare has become more and more institutionalized in provider, management, and insurer organizations. Despite JCAHO's preoccupation with organizational (...) ethics during the last decade, the philosophical underpinnings of their requirements have been less explored in the literature. Clinical ethics remains preoccupied with clinical patient care and professional ethics with individual professional guidelines; even the American College of Healthcare Executives focuses primarily on healthcare managers, not on healthcare organizations. (shrink)

Gap junction intercellular communication channels permit the exchange of small regulatory molecules and ions between neighbouring cells and coordinate cellular activity in diverse tissue and organ systems. These channels have short half‐lives and complex assembly and degradation pathways. Much of the recent work elucidating gap junction biogenesis has featured the use of connexins (Cx), the constituent proteins of gap junctions, tagged with reporter proteins such as Green Fluorescent Protein (GFP) and has illuminated the dynamics of channel assembly in live cells (...) by high‐resolution time‐lapse microscopy. With some studies, however, there are potential short‐comings associated with the GFP chimeric protein technologies. A recent report by Gaietta et al., has highlighted the use of recombinant proteins with tetracysteine tags attached to the carboxyl terminus of Cx43, which differentially labels ‘old’ and ‘new’ connexins thus opening up new avenues for studying temporal and spatial localisation of proteins and in situ trafficking events.1 BioEssays 24:876–880, 2002. © 2002 Wiley Periodicals, Inc. (shrink)

At no point in recorded history has there been an absence of intense, and heated, discussion about the subject of how to conduct relations between women and men. This Handbook provides a comprehensive guide to these omnipresent issues and debates, mapping the present and future of thinking about feminist theory. The chapters gathered here present the state of the art in scholarship in the field, covering: epistemology and marginality; literary, visual and cultural representations; sexuality; macro and microeconomics of gender; conflict (...) and peace. The most important consensus in this volume is that a central organizing tenet of feminism is its willingness to examine the ways in which gender and relations between women and men have been (and are) organized. The authors bring a shared commitment to the critical appraisal of gender relations, as well as a recognition that to think 'theoretically' is not to detach concerns from lived experience but to extend the possibilities of understanding. With this focus on theory and theorizing about the world in which we live, this Handbook asks us, across all disciplines and situations, to abandon our taken-for-granted assumptions about the world and interrogate both the origin and the implications of our ideas about gender relations and feminism."--Publisher description. (shrink)

The prelims comprise: Introduction The Physician and the Provider Organization The Physician and the Payer Organization Dealing with Systems Conclusion Notes References.

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.

This article suggests that an understanding of love which allowed for a rational discourse about human relationships was proposed at the time of the Enlightenment but was subsequently contested and replaced by an ideology of romantic love. Romantic love, far from emancipating human understanding and behaviour, trapped individuals in a narrow and often negative set of expectations and aspirations.

To test if dreams contain remote or never-experienced motor skills, we collected during 6 weeks dream reports from 15 paraplegics and 15 healthy subjects. In 9/10 subjects with spinal cord injury and in 5/5 with congenital paraplegia, voluntary leg movements were reported during dream, including feelings of walking , running , dancing , standing up , bicycling , and practicing sports . Paraplegia patients experienced walking dreams just as often as controls . There was no correlation between the frequency of (...) walking dreams and the duration of paraplegia. In contrast, patients were rarely paraplegic in dreams. Subjects who had never walked or stopped walking 4–64 years prior to this study still experience walking in their dreams, suggesting that a cerebral walking program, either genetic or more probably developed via mirror neurons is reactivated during sleep. (shrink)

This set reprints a wide range of key articles exploring the role of feminists in the development of post-Enlightenment thought. Including groundbreaking work from the 1970s, 1980s and 1990s, with pieces by Sandra Harding, Julia Kristeva, Gayatri Chakravorty Spivak, Elizabeth Spelman, and other internationally-esteemed scholars, the collection features an original introduction and comprehensive index, making this an invaluable resource for women's studies students in a wide range of subject areas. For a full listing of contents, visit www.routledge-ny.com and type the (...) isbn into the search engine. (shrink)

Images That Move is concerned with how images take place in wider worlds: how they move around, via processes of transmission and uptake, but, equally importantly, how they move their audiences affectively. Images play a significant part in projects of "poetic world-making" and political transformation. They participate in the production of commensuration or of incommensurability, enact moments of prophecy or exposure, and attract or repel spectators' attention. Images move, then, but not just as they wish, and any examination of images (...) in motion must also recognise the blockages and breakdowns that prevent their movement as well as the enframings or "stickinesses" that trap them in particular places, prevent them from reaching others, or hedge their arrival in specific ways. The contributors explore topics ranging from high art to mass media, religious iconography to pornography, and popular photography to political cartoons in a range of contexts and media including photography in early twentieth century China, art and literature in contemporary South Africa, upscale real estate development in India, occult media images and the aesthetic of appearance in urban Indonesia, and film censorship in Nigeria. All of these instances of the visual continuum require different ways of highlighting and addressing the problematics of images in motion. Images That Move traces some of the tangled paths of images' travels and returns, unfolding their effects and aftereffects and scanning the diverse and variable publics-fixed or ephemeral, situated or dispersed-that these moving images call into being. Contributors: Ernst van Alphen, Christiane Brosius, Steven C. Caton, Finbarr Barry Flood, Brian Larkin, Oliver Moore, Rosalind C. Morris, Christopher Pinney, Patricia Spyer, Mary Margaret Steedly. (shrink)

Mammalian sex chromosomes exhibit marked sexual dimorphism in behavior during gametogenesis. During oogenesis, the X chromosomes pair and participate in unrestricted recombination; both are transcriptionally active. However, during spermatogenesis the X and Y chromosomes experience spatial restriction of pairing and recombination, are transcriptionally inactive, and form a chromatin domain that is markedly different from that of the autosomes. Thus the male germ cell has to contend with the potential loss of X‐encoded gene products, and it appears that coping strategies have (...) evolved. Genetic control of sex‐chromosome inactivation during spermatogenesis does not involve pairing or the presence of the Y chromosome or an intact X chromosome, and may therefore be under exogenous control by the gonad. Sex‐chromosome reactivation during oogenesis and inactivation during spermatogenesis probably reflect specific meiotic events such as recombination. Understanding these phenomena may help explain other sex‐related differences in genetic recombination. (shrink)

Background There are legal protections for nurse researchers at public universities who employ community-based participatory research (CBPR) in research about social or health inequities. Dissemination of CBPR research data by researchers or participants may divulge unjust laws and create an imperative for university involvement. Research Question What are United States-based legal dissemination protections for CBPR health equity nurse researchers? Research Design Three case examples employing CBPR are examined: 1) a mixed methods study with participants reporting illegal discrimination in a municipal (...) initiative about capacity building in community-based organizations serving children; 2) a visual methods study exposing potential clean air law violations in environmental justice research; and 3) a study examining workload violations and illegal discrimination among hotel workers. Participants and Research Context The cases involved participants from protected social class backgrounds. The research is described with respect to: background, funding, research purpose, and research team; research participants’ power and legal vulnerability; dissemination of relevant research information balancing vulnerability and power; research dissemination issues; potential legal issues involved; and laws researchers may use. Ethical Considerations IRB approval was obtained for the studies. Using a social justice ethical framework, studies highlight actual or potential legal aspects of data dissemination in the context of gathering data about injustice. Findings Legal protections for research data dissemination, whistleblower protection, research advancement protection, anti-harassment protection, false claims, defamation, and visual data liabilities are described. Conclusion Knowledge of legal research data dissemination protections is an essential competency for nurse researchers invested in uplifting social justice. (shrink)