(2008). The Connection Between Postformal Thought and Major Scientific Innovations. World Futures: Vol. 64, Postformal Thought and Hierarchical Complexity, pp. 503-512.

There is growing interest among pharmaceutical policymakers in how to “disinvest” from subsidized medicines. This is due to both the rapidly rising costs of healthcare and the increasing use of accelerated and conditional reimbursement pathways which mean that medicines are being subsidized on the basis of less robust evidence of safety and efficacy. It is crucial that disinvestment decisions are morally sound and socially legitimate, but there is currently no framework to facilitate this. We therefore reviewed the bioethics literature in (...) order to identify ethical principles and concepts that might be relevant to pharmaceutical disinvestment decisions. This revealed a number of key ethical considerations—both procedural and substantive—that need to be considered when making pharmaceutical disinvestment decisions. These principles do not, however, provide practical guidance so we present a framework outlining how they might be applied to different types of disinvestment decisions. We also argue that, in this context, even the most rigorous ethical reasoning is likely to be overridden by moral intuitions and psychological biases and that disinvestment decisions will need to strike the right balance between respecting justifiable moral intuitions and overriding unjustifiable psychological impulses. (shrink)

_Objective:_ The aim of the current study was to investigate associations, unique and interactive, between mothers’ and children’s histories of childhood sexual abuse (CSA) and children’s psychiatric outcomes using an intergenerational perspective. Further, we were particularly interested in examining whether maternal reflective functioning about their own trauma (T-RF) was associated with a lower likelihood of children’s abuse exposure (among children of CSA-exposed mothers). _Methods:_ One hundred and eleven children ( M age = 9.53 years; 43 sexual abuse victims) and their (...) mothers ( M age = 37.99; 63 sexual abuse victims) participated in this study. Mothers completed the Parent Development Interview (PDI), which yielded assessments of RF regarding their own experiences of abuse, and also reported on their children’s internalizing and externalizing symptoms. _Results:_ Children of CSA-exposed mothers were more likely to have experienced CSA. A key result was that among CSA-exposed mothers, higher maternal T-RF regarding their own abuse was associated with lower likelihood of child CSA-exposure. Mothers’ and children’s CSA histories predicted children’s internalizing and externalizing symptoms, such that CSA exposure for mother or child was associated with greater symptomatology in children. _Conclusion:_ The findings show that the presence of either maternal or child CSA is associated with more child psychological difficulties. Importantly in terms of identifying potential protective factors, maternal T-RF is associated with lower likelihood of CSA exposure in children of CSA-exposed mothers. We discuss these findings in the context of the need for treatments focusing on increasing T-RF in mothers and children in the context of abuse to facilitate adaptation and reduce the intergenerational risk. (shrink)

This paper provides an overview of the societal impact of a rising dementia population and examines the legal and ethical implications posed by voluntary registries as a community-oriented solution to improve interactions between law enforcement and individuals with dementia. It provides a survey of active voluntary registries across the United States, with a focus on Arizona, which has the highest projected growth for individuals living with dementia in the country.

ObjectiveMost young adults diagnosed with breast or gynecologic cancers experience adverse reproductive or sexual health outcomes due to cancer and its treatment. However, evidence-based interventions that specifically address the RSH concerns of young adult and/or LGBTQ+ survivor couples are lacking. Our goal is to develop a feasible and acceptable couple-based intervention to reduce reproductive and sexual distress experience by young adult breast and gynecologic cancer survivor couples with diverse backgrounds.MethodsWe systematically adapted an empirically supported, theoretically grounded couple-based intervention to address (...) the RSH concerns of young couples coping with breast or gynecologic cancer through integration of stakeholder perspectives. We interviewed 11 couples with a history of breast or gynecologic cancer to review and pretest intervention materials. Three of these couples were invited to review and comment on intervention modifications. Content experts in RSH and dyadic coping, clinicians, and community advisors participated throughout the adaptation process.ResultsFindings confirmed the need for an online, couple-based intervention to support young couples experiencing RSH concerns after breast or gynecologic cancer. Qualitative themes suggested intervention preferences for: A highly flexible intervention that can be tailored to couples’ specific RSH concerns; Active steps to help members of a dyad “get on the same page” in their relationship and family building plans; A specific focus on raising partners’ awareness about how cancer can affect body image and physical intimacy; and Accessible, evidence-based information about RSH for both partners. These results, along with feedback from stakeholders, informed adaptation and finalization of the intervention content and format. The resulting virtual intervention, Opening the Conversation, includes five weekly sessions offering training to couples in communication and dyadic coping skills for addressing RSH concerns.ConclusionThe systematic adaptation process yielded a theory-informed intervention for young adult couples facing breast and gynecological cancers, which will be evaluated in a randomized controlled trial. The long-term goal is to implement and disseminate Opening the Conversation broadly to reach young adult couples with diverse backgrounds who are experiencing RSH concerns in cancer survivorship. (shrink)

Reflecting on their service as mentors in the fellowship program, the authors describe their experiences and offer thoughts on lessons learned about mentoring, individuals' roles in institutional changes, their own professional growth, and implications for and evaluation of legal and interprofessional education.

In recent years, the growth of interest in global health among medical students and residents has led to an abundance of short-term training opportunities in low-resource environments. Given the disparities in resources, needs and expectations between visitors and their hosts, these experiences can raise complex ethical concerns. Recent calls for best practices and ethical guidelines indicate a need for the development of ethical awareness among medical trainees, their sponsoring and host institutions, and supervising faculty. As a teaching tool to promote (...) this awareness, we developed a scenario that captures many common ethical issues from four different perspectives. Each perspective is presented in case format followed by questions. Taken together, the four cases may be used to identify many of the elements of a well-designed global health training experience. (shrink)

Bajo un paradigma cualitativo-interpretativo, se realizó un análisis de contenido de los planes y programas de filosofía chilenos, respecto de las orientaciones ministeriales acerca del desarrollo del pensamiento complejo y la metacognición contenidos en éstos. A partir de las categorías que emergieron, se procedió a realizar entrevistas a los profesores del nivel, para confrontar la congruencia de los lineamientos con las concepciones y prácticas descritas por ellos.Se constató la existencia de un enfoque académico-racionalista de las concepciones y actividades curriculares, concepciones (...) reduccionistas del pensamiento complejo y la metacognición, trasladando la responsabilidad de la falta de logro a sus estudiantes. (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.

Bajo un paradigma cualitativo-interpretativo este estudio realizó un análisis a partir del discurso de futuros profesores en Chile en torno a su formación y la incorporación de la variable género en clave de inclusión. A partir de las dimensiones definidas previamente, se levantaron categorías que emergieron del discurso, aplicadas a la conversación y a los actos de habla. Las principales conclusiones dan cuenta del reconocimiento de la importancia de esta perspectiva, en el reconocimiento de aulas diversas para las cuales se (...) tienen intuitivas, o desde lo aprendido autónomamente, pero no desde lo adquirido en la formación inicial como profesores. (shrink)

During much of U.S. history, Black women had higher employment rates than white women. But by the late twentieth century, women in more privileged racial/ethnic, national origin, and education groups were more likely to work for pay. The authors compare the employment of white women to Blacks and three groups of Latinas—Mexicans, Cubans, and Puerto Ricans—and explain racial/ethnic group differences. White women work for pay more weeks per year than Latinas or Black women, although the gaps are small for all (...) groups but Mexicans. In all groups, education encourages and children reduce employment. Having a husband does not reduce employment, and husbands’ earnings have little effect. The higher fertility of Mexicans and the large number of recent immigrants among Mexican women reduce their employment relative to that of white women. The higher education of white women explains large shares of the employment gap with each group of women of color because, in today’s labor market, education strongly predicts employment. (shrink)

Book reviewed in this article: Women & Children in Health Care: An Unequal Majority. By Mary Briody Mahowald.

In the December 2006 edition of Harvard Business Review , Michael Porter and Mark Kramer argue that by approaching corporate social responsibility (CSR) based on corporate priorities, strengths and abilities, firms can develop socially and fiscally responsible solutions to current CSR issues, which will provide operational and competitive advantages. We agree that an effective approach to CSR includes a mapping of strategy, risk and opportunity. However, we also caution that the identification of these to the exclusion of societal input may (...) not be to the corporation's advantage. Instead, an investment in both strategic analysis and social capital can pay off from a social and an organizational standpoint. Compared with their larger counterparts, small- and medium-sized enterprises (SMEs) frequently have stronger relationships with their internal and external stakeholders that foster the development of social capital. As such, we believe that the sector offers a unique opportunity to identify additional models and frameworks in order to approach a strategic CSR model as espoused by Porter and Kramer. This paper explores a case study of one Canadian SME that uses a community development framework called Asset Based Community Development (ABCD) for its CSR programming. Because ABCD relies heavily on the development and maintenance of social capital and can be utilized to attain set objectives, we propose that it provides a supplementary framework through which the arguments of Porter and Kramer can be expanded. In applying the ABCD framework for CSR, we can begin to establish a programme that supports strategy, integrates employees and stakeholders towards a common vision, and creates unique and sustainable alternatives towards the resolution of social and corporate goals. (shrink)

Surgical devices are often marketed before there is good evidence of their safety and effectiveness. Our paper discusses the ethical issues associated with the early marketing and use of new surgical devices from the perspectives of the six groups most concerned. Health Canada, which is responsible for licensing new surgical devices, should amend their requirements to include rigorous clinical trials that provide data on effectiveness and safety for each new product before it is marketed. Industry should comply with all Health (...) Canada requirements to obtain licenses for new products. Until Health Canada requires effectiveness and safety data, industry should cooperate with physicians in appropriate studies before releasing new products and should make balanced presentations of all the available evidence. Surgeons should, before using a new surgical device, assess the evidence on its effectiveness and safety and ensure they are properly trained and competent in using the device. Surgeons should provide their patients with an evaluation of the available evidence and inform them about possible complications and the surgeon's level of experience with the new device. Patients, who should be given an honest evaluation of the available evidence, possible complications, and the surgeon's experience, should be encouraged to evaluate the evidence and information to their own satisfaction to ensure that fully informed consent is given. Health institutions, responsible for regulating practice within their walls, should review new devices for safety, effectiveness, and economic impacts, before allowing their use. They should also limit the use of new surgical devices to surgeons trained and competent in the new technology. Professional societies should provide guidance on the early adoption of new surgical devices and technologies. We urge all those involved in the development, licensing, and use of new surgical devices to aim for higher ethical standards to protect the health and safety of patients requiring surgery. The lowest acceptable ethical standard would require device manufacturers to provide surgeons with accurate and timely information on the efficacy and safety of their products, allowing surgeons and patients to evaluate the evidence (and the significance of information not yet available) before surgery. (shrink)

"The enterprise initiative is probably the most significant political and cultural influence to have affected Western and Eastern Europe in the last decade. In this book, academics from a range of disciplines debate Mary Douglas's distinctive Grid Group cultural theory and examine how it allows us to analyse the complex relation between the culture of enterprise and its institutions. Mary Douglas, Britain's leading cultural anthropologist, contributes several chapters."--BOOK JACKET.Title Summary field provided by Blackwell North America, Inc. All Rights Reserved.

Mary Shepherd (1777–1847) was a fierce and brilliant critic of Berkeley and Hume, who moreover offered strikingly original positive views about the nature of reality and our access to it which deserve much more attention (and credit, since she anticipates many prominent views) than they have received thus far. By way of illustration, I focus on Shepherd's 1824 Essay Upon the Relation of Cause and Effect, Controverting the Doctrine of Mr. Hume, Concerning the Nature of that Relation (ERCE). After a (...) brief setup, I canvas certain of her trenchant objections to Hume’s argumentation; I then present the positive core of her response to Hume, which consists in providing novel accounts of how reason alone or reason coupled with experience can justify, first, that every effect must have a cause, and second, that it is necessary that like causes produce like effects. Among other contributions here, Shepherd provides a distinctively metaphysical argument for the claim that nothing can begin to exist 'of itself' (going beyond an appeal to the Principle of Sufficient Reason, in particular), and leverages difference-making considerations to make the case that a single 'experimentum crucis' can justify causal belief (anticipating Mill's 'method of difference'). I close by highlighting salient features of Shepherd's metaphysics of causation, whereby causation is singularist and local (anticipating Ducasse and Anscombe) and involves synchronic interactions (anticipating Mill's and certain contemporary accounts), and according to which objects are essentially characterized by their causes and effects (anticipating contemporary causal or dispositional essentialist positions). (shrink)

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)

Membership in the Kyoto School of philosophy is defined by both formal and conceptual criteria. Keta Masako 氣多雅子 is a member in good standing in both senses. Formally speaking, she currently occupies the Chair in Religious Studies at Kyoto University.1 This chair, together with the Chair in Philosophy, constitutes the formal nexus of the Kyoto School.2 Keta is the first woman to hold the chair, constellating her in a network that radiates “from the rather substantial circle of students and professors (...) that had formed around Nishida [Kitarō] during his final years at Kyoto and that had continued with Tanabe [Hajime].”3 Conceptually speaking, the Kyoto School is defined by a critical reflection on Asian and European... (shrink)

Background Noninvasive prenatal testing (NIPT) provides important benefits yet raises ethical concerns. We surveyed Canadian pregnant women and their partners to explore their views regarding pressure to test and terminate a pregnancy, as well as other societal impacts that may result from the routinization of NIPT.Methods A questionnaire was offered (March 2015 to July 2016) to pregnant women and their partners at five healthcare facilities in four Canadian provinces.Results 882 pregnant women and 395 partners completed the survey. 64% of women (...) anticipated feeling no pressure to take the test if it were offered routinely, and 39% were not concerned about routinization leading to increased pressure to terminate a pregnancy of a fetus with Down Syndrome. Regarding other social concerns possibly resulting from routinization, pregnant women were most concerned regarding a reduction in resources available for people with Down Syndrome and their families and least concerned regarding a decrease in the population of people with Down Syndrome.Conclusions Our findings reflect the concerns expressed by pregnant women and their partners, both personal (pressure to test, pressure to terminate) and societal (e.g., regarding potential negative impact on people with disabilities and their families). Even if most women were not concerned about feeling pressured to test due to NIPT routinization, a large minority express concerns that should not be taken lightly. Moreover, a majority of respondents were concerned regarding pressure to terminate pregnancies due to NIPT routinization as well as regarding most societal impacts they were queried on, especially the possible future reduction in resources available for people with DS and their families. Canadian policy-makers should consider these potential negative ramifications of NIPT and ensure that appropriate social policies accompany its implementation. (shrink)

Pancreatitis is a complex, progressively destructive inflammatory disorder. Alcohol was long thought to be the primary causative agent, but genetic contributions have been of interest since the discovery that rare PRSS1, CFTR and SPINK1 variants were associated with pancreatitis risk. We now report two associations at genome-wide significance identified and replicated at PRSS1-PRSS2 and X-linked CLDN2 through a two-stage genome-wide study. The PRSS1 variant likely affects disease susceptibility by altering expression of the primary trypsinogen gene. The CLDN2 risk allele is (...) associated with atypical localization of claudin-2 in pancreatic acinar cells. The homozygous CLDN2 genotype confers the greatest risk, and its alleles interact with alcohol consumption to amplify risk. These results could partially explain the high frequency of alcohol-related pancreatitis in men. © 2012 Nature America, Inc. All rights reserved. (shrink)

In the wake of the collapse of the Soviet bloc, it is timely to ask what continuing role, if any, the concept of sovereignty can and should play in the emerging "new world order." The aim of _Law, Power, and the Sovereign State_ is both to counter the argument that the end of the sovereign state is close at hand and to bring scholarship on sovereignty into the post-Cold War era. The study assesses sovereignty as status and as power and (...) examines the issue of what precisely constitutes a sovereign state. In determining how a political entity gains sovereignty, the authors introduce the requirements of de facto independence and de jure independence and explore the ambiguities inherent in each. They also examine the political process by which the international community formally confers sovereign status. Fowler and Bunck trace the continuing tension of the "chunk and basket" theories of sovereignty through the history of international sovereignty disputes and conclude by considering the usefulness of sovereignty as a concept in the future study and conduct of international affairs. They find that, despite frequent predictions of its imminent demise, the concept of sovereignty is alive and well as the twentieth century draws to a close. (shrink)

Background and Objectives: Stress is a ubiquitous aspect of modern life that affects both mental and physical health. Clinical care settings can be particularly stressful for both patients and providers. Kindness and compassion are buffers for the negative effects of stress, likely through strengthening positive interpersonal connection. In previous laboratory-based studies, simply watching kindness media uplifts viewers, increases altruism, and promotes connection to others. The objective of the present study is to examine whether kindness media can affect viewers in a (...) real-world, pediatric healthcare setting.Methods: Parents and staff in a pediatric dental clinic were studied. Study days were randomized for viewers to watch either original kindness media or the standard televised children’s programming that the clinic shows. Participants scored self-rated pre-media emotions in a survey, watched either media type for 8 min, and then completed the survey. All participants were informed that they would receive a gift card for their participation. After completion of the survey, participants were asked if they wanted to keep the card or donate it to a family in need.Results: Fifty participants completed the study; 28 were parents and 22 were staff. In comparison to viewers of children’s programming, participants who watched kindness media had significant increases in feeling happy, calmer, more grateful, and less irritated, with trends observed in feeling more optimistic and less anxious. Kindness media caused marked increases in viewers’ reports of feeling inspired, moved, or touched. No change was observed in self-reported compassion, although baseline levels were self-rated as very high. People who watched kindness media were also more generous, with 85% donating their honoraria compared to 54% of Standard viewers.Conclusions: Kindness media can increase positive emotions and promote generosity in a healthcare setting. (shrink)

The evolution of humans required performing increasingly hierarchically complex tasks within multiple domains. Hierarchical complexity increases task by task. Tasks occur within, and differ by, determinable domains, their stages of performance measurable using the Model of Hierarchical Complexity. How well one performs within single and multiple domains is considered to indicate intelligence. Original task-initiation is more difficult than imitational learning and can create new domains. Levels of support reduce task difficulty, increasing performance. Task-performance may be generalized to other domains. Stages (...) of developing tools and empathy are presented to demonstrate domains' roles in the evolution of human intelligence. (shrink)

Formalised knowledge systems, including universities and research institutes, are important for contemporary societies. They are, however, also arguably failing humanity when their impact is measured against the level of progress being made in stimulating the societal changes needed to address challenges like climate change. In this research we used a novel futures-oriented and participatory approach that asked what future envisioned knowledge systems might need to look like and how we might get there. Findings suggest that envisioned future systems will need (...) to be much more collaborative, open, diverse, egalitarian, and able to work with values and systemic issues. They will also need to go beyond producing knowledge about our world to generating wisdom about how to act within it. To get to envisioned systems we will need to rapidly scale methodological innovations, connect innovators, and creatively accelerate learning about working with intractable challenges. We will also need to create new funding schemes, a global knowledge commons, and challenge deeply held assumptions. To genuinely be a creative force in supporting longevity of human and non-human life on our planet, the shift in knowledge systems will probably need to be at the scale of the enlightenment and speed of the scientific and technological revolution accompanying the second World War. This will require bold and strategic action from governments, scientists, civic society and sustained transformational intent. (shrink)

Is helping those whose subsistence needs are not meet a matter of charity or an obligation? What role should ordinary citizens of developed nations play? In a globalized world, the causes, connections, and responsibilities become complicated. Agriculture subsidies that keep food prices low for many in relatively rich countries may, for example, negatively impact poor farmers in developing countries. Students in Ethics/Philosophy 352 report on their project examining whether, and to what extent, a true obligation to aid exists.

Formalised knowledge systems, including universities and research institutes, are important for contemporary societies. They are, however, also arguably failing humanity when their impact is measured against the level of progress being made in stimulating the societal changes needed to address challenges like climate change. In this research we used a novel futures-oriented and participatory approach that asked what future envisioned knowledge systems might need to look like and how we might get there. Findings suggest that envisioned future systems will need (...) to be much more collaborative, open, diverse, egalitarian, and able to work with values and systemic issues. They will also need to go beyond producing knowledge about our world to generating wisdom about how to act within it. To get to envisioned systems we will need to rapidly scale methodological innovations, connect innovators, and creatively accelerate learning about working with intractable challenges. We will also need to create new funding schemes, a global knowledge commons, and challenge deeply held assumptions. To genuinely be a creative force in supporting longevity of human and non-human life on our planet, the shift in knowledge systems will probably need to be at the scale of the enlightenment and speed of the scientific and technological revolution accompanying the second World War. This will require bold and strategic action from governments, scientists, civic society and sustained transformational intent. (shrink)

Humans can recollect past events in details and/or know that an object, person, or place has been encountered before. During the last two decades, there has been intense debate about how recollection and familiarity are organized in the brain. Here, we propose an integrative memory model which describes the distributed and interactive neurocognitive architecture of representations and operations underlying recollection and familiarity. In this architecture, the subjective experience of recollection and familiarity arises from the interaction between core systems and an (...) attribution system. By integrating principles from current theoretical views about memory functioning, we provide a testable framework to refine the prediction of deficient versus preserved mechanisms in memory-impaired populations. The case of Alzheimer's disease is considered as an example because it entails progressive lesions starting with limited damage to core systems before invading step-by-step most parts of the model-related network. We suggest a chronological scheme of cognitive impairments along the course of AD, where the inaugurating deficit would relate early neurodegeneration of the perirhinal/anterolateral entorhinal cortex to impaired familiarity for items that need to be discriminated as viewpoint-invariant conjunctive entities. The integrative memory model can guide future neuropsychological and neuroimaging studies aiming to understand how such a network allows humans to remember past events, to project into the future, and possibly also to share experiences. (shrink)

InDemocracy in America, Tocqueville described the ideal wife of a democratic citizen as a capable domestic helpmeet who enables the citizen‐husband to endure the daily trials of political activity. Tocqueville's biographers have presented Tocqueville's own wife Mary Mottley as having approximated this ideal. Mottley's importance, it is claimed, lay in providing the domestic calm and psychological support that Tocqueville needed to think, act, and write as he did. My aim in this article is to challenge this interpretation by offering an (...) overdue reassessment of Mottley's life and work, uncovering the hidden labors she performed in Tocqueville's circle and giving scope, where possible, to her own political views and activities. Mottley, I argue, refused to confine herself to the domestic‐management and emotional‐support roles typical of a Tocquevillian citizen‐wife. Instead, she carved out a role for herself as Tocqueville's political and intellectual interlocutor. (shrink)

Several of the most compelling anti-materialist arguments are motivated by the supposed existence of an unbridgeable epistemic gap between first-person subjective knowledge about one’s own conscious experience and third-personally acquired knowledge. The two with which this paper is concerned are Frank Jackson’s ‘knowledge argument’ and David Chalmers’s ‘modal argument’. The knowledge argument and the modal argument are often taken to function as ‘two sides of the same coin … in principle each succeeds on its own, but in practice they work (...) best in tandem’. This paper disagrees with the above claim, and argues that when considered together the knowledge argument and modal arguments illuminate each other’s weaknesses. These weaknesses become apparent when we acknowledge the epistemic richness of the cognitive aspect of perceptual experience, and question the epistemic role that any non-cognitive aspect might play. Closer examination of judgments about what it’s like to have a perceptual experience reveals fundamental problems with the knowledge argument, and when these problems are exposed, the two arguments can no longer ‘buttress each other where help is needed’. It becomes clear that neither is likely to succeed on its own, and when taken together both are destabilized. (shrink)

The integrative memory model formalizes a new conceptualization of memory in which interactions between representations and cognitive operations within large-scale cerebral networks generate subjective memory feelings. Such interactions allow to explain the complexity of memory expressions, such as the existence of multiples sources for familiarity and recollection feelings and the fact that expectations determine how one recognizes previously encountered information.

Objective To develop an ethically, legally, and clinically appropriate ventilator allocation policy for AdventHealth Tampa and AdventHealth Carrollwood in Tampa, Florida, which could be enacted swiftly during the Covid-19 pandemic. Methods During Spring 2020, a subcommittee of the Medical Ethics Committee established consensus on the fundamental principles of the policy, then built on existing ethical, legal, and clinical guidance. Results The plan was finalized in May 2020. The plan triages patients based on exclusion criteria (imminent mortality), prognosis and expected benefit (...) of ventilation (using the Sequential Organ Failure Assessment), and change in prognosis over time. Decisions are made by committee in order to minimize moral distress among individual patient care providers. Conclusions Due to international concerns about healthcare resource shortages during the Covid-19 pandemic, hospitals need allocation policies informed by the crisis standard of care, the hospital’s ethical duty to plan for an emergency, and federal civil rights laws Policy Implications: This type of policy can serve as a model for other institutions to develop crisis standards of care resource allocation policies, which are a necessary component of disaster planning. (shrink)

The fact that Internet companies may record our personal data and track our online behavior for commercial or political purpose has emphasized aspects related to online privacy. This has also led to the development of search engines that promise no tracking and privacy. Search engines also have a major role in spreading low-quality health information such as that of anti-vaccine websites. This study investigates the relationship between search engines’ approach to privacy and the scientific quality of the information they return. (...) We analyzed the first 30 webpages returned searching “vaccines autism” in English, Spanish, Italian, and French. The results show that not only “alternative” search engines but also other commercial engines often return more anti-vaccine pages (10–53%) than Google (0%). Some localized versions of Google, however, returned more anti-vaccine webpages (up to 10%) than Google. Health information returned by search engines has an impact on public health and, specifically, in the acceptance of vaccines. The issue of information quality when seeking information for making health-related decisions also impact the ethical aspect represented by the right to an informed consent. Our study suggests that designing a search engine that is privacy savvy and avoids issues with filter bubbles that can result from user-tracking is necessary but insufficient; instead, mechanisms should be developed to test search engines from the perspective of information quality (particularly for health-related webpages) before they can be deemed trustworthy providers of public health information. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

Objective:Prior research examining sexual and intimacy concerns among metastatic breast cancer patients and their intimate partners is limited. In this qualitative study, we explored MBC patients’ and partners’ experiences of sexual and intimacy-related changes and concerns, coping efforts, and information needs and intervention preferences, with a focus on identifying how the context of MBC shapes these experiences.Methods:We conducted 3 focus groups with partnered patients with MBC [N = 12; M age = 50.2; 92% White; 8% Black] and 6 interviews with (...) intimate partners [M age = 47.3; 83% White; 17% Black]. Participants were recruited through the Fox Chase Cancer Center Tumor Registry and the Cancer Support Community. Qualitative data were analyzed using the Framework Method and Dedoose software.Results:Qualitative analyses revealed several key themes reflecting ways in which MBC shapes experiences of sex/intimacy: the heavy disease/treatment burden leads to significant, long-term sexual concerns and consequent heightened emotional distress for both patients and partners ; viewing the relationship as having “an expiration date” influences patients’ and partners’ concerns related to sex/intimacy and complicates coping efforts; and information needs extend beyond managing sexual side effects to include emotional aspects of intimacy and the added strain of the life-limiting nature of the disease on the relationship. The heightened severity of sexual concerns faced by patients with MBC, compounded by the terminal nature of the disease, may place patients and partners at risk for significant adverse emotional and interpersonal consequences.Conclusion:Findings suggest unique ways in which sex and intimate relationships change after a diagnosis of metastatic breast cancer from both patients’ and partners’ perspectives. Consideration of the substantial physical and emotional burden of MBC and the broader context of the relationship and intimacy overall is important when developing a sexuality-focused intervention in this population. Addressing sexual concerns is a critical part of cancer care with important implications for patients’ health and quality of life. (shrink)