By any reasonable standard of assessment, it is clear that human beings lead lives of wildly varying quality. People who live in different societies or belong to different social classes often differ greatly in their life expectancy, material resources, political rights and personal freedoms, and levels of nutrition and health, as well as in their access to education and medical care and their vulnerability to violence and assault. At the extremes, at least, these differences are normally accompanied by great (...) differences in the range of options people have available to them, in their prospects of achieving their aims, and in their sense of satisfaction with their own lives. Whereas many people in many countries enjoy a high level of prosperity and material comfort, and have a reasonable chance of achieving a significant measure of personal fulfillment over the course of their lives, there are many others who can look forward to little more than a miserable life and an early death. Although great progress has been made in combating the worst forms of poverty in recent decades, there continue to be people who live in conditions of extreme deprivation and malnutrition; people whose lack of medical care leaves them defenseless against infection and disease; people who have never received a formal education, have no political.. (shrink)

Meta Analyses for Improvements in Wetlands, Terrestrial Habitat, and Surface Water Quality.….

According to the nineteenth century English philosopher John Stuart Mill, all human beings desire to live lives pregnant with happiness; we all long to be the recipients of liberal amounts of varied, high quality pleasures with pain making as brief an appearance in our conscious experience as possible. Happiness is the one and only thing we desire for its own sake; everything else is desirable simply as a means to securing happiness. Perhaps this is so. Mill, however, went on (...) to argue that promoting happiness of this sort is not only desirable, it is in fact a moral obligation on our part. Suppose that on some delicious fall evening you are contemplating whether to pick up Dickens' David Copperfield and read a chapter or two. Well, given the alternatives before you, if reading Dickens would result in the greatest amount of happiness, not only for yourself but also for all those affected by your solitary, bookish reverie, then you can be sure your action is morally right and indeed obligatory. (shrink)

The performance records of cardiac surgeons have been disclosed publicly in several states in the USA, for example New York and Pennsylvania, since the early 1990s. In response to the growing interest in the quality of healthcare, such records have also begun to be disclosed in the UK, starting in 2004. Various studies seem to show that disclosure has, indeed, contributed to the improvement of the quality of healthcare.1 However, at the same time, disclosure does have its critics.2 (...) In this paper, I discuss what I call the ‘defensive medicine objection’ to the disclosure of performance data; that disclosure is not justified because it could cause surgeons to experience high levels of anxiety3, which might eventually lead to the practice of defensive medicine. Although this objection is often mentioned by ethicists and medical professionals4 it has never been carefully analysed or evaluated. The aim of this paper is to consider it in detail. I argue in favour of the objection; disclosure could, indeed, lead to the practice of defensive medicine if it is not conducted properly.5 This paper has the following structure. In Section 2 I discuss the anxiety that surgeons may experience regarding the disclosure of performance data. In Section 3 I introduce a traditional definition of defensive medicine. In Section 4 I argue that disclosure could encourage surgeons to perform a new form of defensive medicine, one that is not captured by the traditional definition. In Section 5 I undermine the claim that surgeons have no good reason to be anxious about disclosure. In Section 6 I consider a possible way of avoiding.. (shrink)

of (from British Columbia Philosophy Graduate Conference) Despite the apparent polarity between the philosophies of Wittgenstein and G�del, I here seek to demonstrate and consider important similarities in these two allegedly disparate interpretations of mathematical proposition. Wittgenstein asserts that the meaning is comprised by proof, while G�del relegates provability to an intrinsically imperfect status. Each represents metamathematical statements as severely limited, and analysis emphasizing the complementary here yields a rich interpretation of mathematical proposition: invention, but not without a basis for (...) describing these inventions as incomplete. As contrivances that exhibit a necessarily imperfect correlation to hypothetical completeness, the extent to which any one system is comparatively useful is thus a reflection of the degree of imperfection with which it correlates to the otherwise inarticulable qualities that dictate usefulness. Inconsistency produced by our necessarily incomplete systems should therefore be viewed as a natural consequence of the inherent imperfect correlation, and so admits of meaningful interpretation. (shrink)

Feelings and experiences vary widely. For example, I run my fingers over sandpaper, smell a skunk, feel a sharp pain in my finger, seem to see bright purple, become extremely angry. In each of these cases, I am the subject of a mental state with a very distinctive subjective character. There is something it is like for me to undergo each state, some phenomenology that it has. Philosophers often use the term ‘qualia’ (singular ‘quale’) to refer to the introspectively accessible, (...) phenomenal aspects of our mental lives. In this standard, broad sense of the term, it is difficult to deny that there are qualia. Disagreement typically centers on which mental states have qualia, whether qualia are intrinsic qualities of their bearers, and how qualia relate to the physical world both inside and outside the head. The status of qualia is hotly debated in philosophy largely because it is central to a proper understanding of the nature of consciousness. Qualia are at the very heart of the mindbody problem. (shrink)

This study extended the scope of previous findings in human–computer interaction research within the computers are social actors paradigm by showing that online users attribute perceptions of moral qualities to Websites and, further, that differential perceptions of morality affected the extent of persuasion. In an experiment (N = 138) that manipulated four morality conditions (universalist, relativist, egotistic, control) across worldview, a measured independent variable, users were asked to evaluate a Web site designed to aid them in making ethical decisions. Web (...) sites offered four different types of ethical advice as participants contemplated cases involving ethical quandaries. Perceptions of the Web sites’ moral qualities varied depending on the type of advice given. Further, the Web sites’ perceived morality and participants’ worldview predicted credibility, persuasiveness, and attitudes toward the Web sites. (shrink)

We address the fundamental question why we should use PageRank and similar link-based algorithms in search engines, if at all. In a legendary article from 1998, the Google founders gave an intriguing wisdom-of-crowds justification for PageRank according to which the latter tracks quality online. This striking suggestion stands in contrast to the view that PageRank merely tracks what is popular. However, Masterton and Olsson showed that web-ecologies generated by Google-like assumptions essentially fail to reflect the scale-free structure of the (...) web. They pointed to attraction to popularity or a rich-get-richer effect being the likely main cause of scalefreeness. In this article, we explore dual models of linking behavior, i.e. models that combine attraction to importance with attraction to popularity. Our results, obtained through computer simulation, indicate that there exist dual models that give rise both to a wisdom-of-crowds effect for PageRank and to scale-free web-graphs, thus giving a partial vindication of the wisdom-of-crowds thesis for the real web. Future work should explore larger web-graphs as well as other aspects pertaining to the empirical plausibility of dual linking models. (shrink)

This observational study analyzes the impact of Internet use on the quality of life and well-being of the elderly. Specifically, it seeks to understand and clarify the effects of Internet use on relationships in terms of self-esteem, life satisfaction and online and offline social support in a sample of senior and elderly Italian people (over 60 years of age). A cohort of 271 elderly people (133 males, 138 females) aged between 60 and 94 years old participated in the study: (...) 236 were Internet Users while the other 35 were Non-Internet Users. The results showed that the time elderly people spend online has a negative effect on their perception of Offline Social Support (Offline Emotional and Informational, and Offline Affective Social Support) and a positive effect on their perception of Online Social Support (particularly on Online Positive Social Interactions). Surprisingly, Internet Use among elderly people seems to impact positively on the perception of Offline Social Support. Indeed, Elderly Internet Users have a more positive perception of Offline Social Support (particularly Offline Positive Social Interactions and Offline Affective Social Support) than Non-Internet Users. A discussion of this finding is provided, positing that the Internet seems to represent the technological side of a functional organ that allows the elderly to stay in closer touch with their family and friends, and in doing so to also overcome some age-related difficulties. (shrink)

Discovery of representative Web pages regarding specific topics is important for assisting users' information retrieval from the Web. Researches on Web structure mining, whose goals are to discover or to rank important Web pages based on the graph structure of hyperlinks, have been very active recently. A complete bipartite of Web graph, which is composed of centers (containing useful information regarding specific topic) and fans (containing hyperlinks to centers), can be regarded as a Web community sharing a common interest. Although (...) Murata's method for discovering Web communities is a simple method for finding related Web pages, it has the following weaknesses: (1) since the number of centers increases monotonously, pages irrelevant to the members of Web communities may be added in the process of discovery, and (2) since the number of fans decreases monotonously according as the number of centers increases, the method may suffer topic drift. This paper describes an improved method for refining Web communities in order to acquire representative Web pages of the topics of input Web communities. The method is based on the assumption that most of the fans contain hyperlinks pointing to representative pages regarding their topic, and that hyperlinks to the pages of the same quality often co-occur. In our new method, both fans and centers are renewed iteratively by the result of the majority vote of the members of previous Web community. Results of our experiments show that the new method has abilities of finding desirable pages for several topics. (shrink)

In this paper I investigate the web-rhetoric of companies offering home-based personal health monitoring to patients and elderly people. Two main rhetorical methods are found, namely a reference to practical benefits and a use of prestige words like “quality of life” and “independence”. I interpret the practical benefits in terms of instrumental values and the prestige words in terms of final values. I also reconstruct the arguments on the websites in terms of six different types of argument. Finally, I (...) articulate a general critique of the arguments, namely that the websites neglect the context of use of personal health monitoring technologies. Whether or not a technology is good depends on the use of the technology by a particular individual in a particular context. The technology is not good–or bad–in itself. I support this critique with a number of more specific arguments such as the risk for reduced personal contact. For some elderly people social contact with care providers is more valuable than the independent living made possible by remote monitoring, for others independence is more important. (shrink)

With the current changes driven by the expansion of the World Wide Web, this book uses a different approach from other books on the market: it applies ontologies to electronically available information to improve the quality of knowledge management in large and distributed organizations. Ontologies are formal theories supporting knowledge sharing and reuse. They can be used to explicitly represent semantics of semi-structured information. These enable sophisticated automatic support for acquiring, maintaining and accessing information. Methodology and tools are developed (...) for intelligent access to large volumes of semi-structured and textual information sources in intra- and extra-, and internet-based environments to employ the full power of ontologies in supporting knowledge management from the information client perspective and the information provider. The aim of the book is to support efficient and effective knowledge management and focuses on weakly-structured online information sources. It is aimed primarily at researchers in the area of knowledge management and information retrieval and will also be a useful reference for students in computer science at the postgraduate level and for business managers who are aiming to increase the corporations' information infrastructure. The Semantic Web is a very important initiative affecting the future of the WWW that is currently generating huge interest. The book covers several highly significant contributions to the semantic web research effort, including a new language for defining ontologies, several novel software tools and a coherent methodology for the application of the tools for business advantage. It also provides 3 case studies which give examples of the real benefits to be derived from the adoption of semantic-web based ontologies in "real world" situations. As such, the book is an excellent mixture of theory, tools and applications in an important area of WWW research. * Provides guidelines for introducing knowledge management concepts and tools into enterprises, to help knowledge providers present their knowledge efficiently and effectively. * Introduces an intelligent search tool that supports users in accessing information and a tool environment for maintenance, conversion and acquisition of information sources. * Discusses three large case studies which will help to develop the technology according to the actual needs of large and or virtual organisations and will provide a testbed for evaluating tools and methods. The book is aimed at people with at least a good understanding of existing WWW technology and some level of technical understanding of the underpinning technologies (XML/RDF). It will be of interest to graduate students, academic and industrial researchers in the field, and the many industrial personnel who are tracking WWW technology developments in order to understand the business implications. It could also be used to support undergraduate courses in the area but is not itself an introductory text. (shrink)

Web 2.0 innovations may enhance informed patient decision-making, but also raise ethical concerns about inaccurate or misleading information, damage to the doctor-patient relationship, privacy and confidentiality, and health disparities. To increase the benefits and decrease the risks of these innovations, we recommend steps to help patients assess the quality of health information on the Internet; promote constructive doctor-patient communication about new information technologies; and set standards for privacy and data security in patient-controlled health records and for point-of-service advertising.

Digital transformation has allowed to offer additional services - which complement the main product - both in terms of use, emotional and relationship terms. Focused on a traditionally rational insurance customer offering a value that explores the customer's emotions, from co-creating with the user, allows brand differentiation. Given this idea, this document has three purposes. First, identify the role of expectations and the perceived quality of the customer's digital experience. Secondly, to identify the relationship between experience and satisfaction gained (...) in private insurance web areas. Third, identify the most valued digital attributes by the user. A sample of 4,178 customers registered was analyzed using the partial least squares technique. The model is highly predictive to customer experience and evidence the important relationship between the WOW effect and satisfaction, as well as the weak but doble role that expectations play on insurance digital self-service. The model demonstrates that expectations are only relevant before web consumption, because during the process it is the perceived digital quality, in particular the usefulness, information and technology, that offer a true customer experience. This article offers high academic value because it more accurately defines the determinants of the digital insurance customer experience and its effect on customer satisfaction in digital services. While expectations influence attitude before service, this research reveals that perceived digital quality is what delivers a true customer experience. Strategically, the implications are immediate in the field of business as it shows the importance of co-creation in digital design, not only because of the significant savings in implementation costs but also because it guarantees a greater experience, essential in the loyalty of its customers. This ensures the sustainable growth of the company. (shrink)

Automatically clustering web pages into semantic groups promises improved search and browsing on the web. In this paper, we demonstrate how user-generated tags from largescale social bookmarking websites such as del.icio.us can be used as a complementary data source to page text and anchor text for improving automatic clustering of web pages. This paper explores the use of tags in 1) K-means clustering in an extended vector space model that includes tags as well as page text and 2) a novel (...) generative clustering algorithm based on latent Dirichlet allocation that jointly models text and tags. We evaluate the models by comparing their output to an established web directory. We find that the naive inclusion of tagging data improves cluster quality versus page text alone, but a more principled inclusion can substantially improve the quality of all models with a statistically signifi- cant absolute F-score increase of 4%. The generative model outperforms K-means with another 8% F-score increase. (shrink)

Generalized linear mixed models estimate fixed and random effects and are especially useful when the dependent variable is binary, ordinal, count or quantitative but not normally distributed. They are also useful when the dependent variable involves repeated measures, since GLMMs can model autocorrelation. This study aimed to determine how and how often GLMMs are used in psychology and to summarize how the information about them is presented in published articles. Our focus in this respect was mainly on frequentist models. In (...) order to review studies applying GLMMs in psychology we searched the Web of Science for articles published over the period 2014–2018. A total of 316 empirical articles were selected for trend study from 2014 to 2018. We then conducted a systematic review of 118 GLMM analyses from 80 empirical articles indexed in Journal Citation Reports during 2018 in order to evaluate report quality. Results showed that the use of GLMMs increased over time and that 86.4% of articles were published in first- or second-quartile journals. Although GLMMs have, in recent years, been increasingly used in psychology, most of the important information about them was not stated in the majority of articles. Report quality needs to be improved in line with current recommendations for the use of GLMMs. (shrink)

_Psychology on the Web: A Student Guide_ is directed at those who want to be able to access psychology Internet resources quickly and efficiently without needing to become IT experts. The emphasis throughout is on the location of high quality psychology related Internet resources likely to be useful for learning, teaching and research, from among the billions of publicly accessible Web pages. Whilst the author has drawn on a large volume of technical literature, it is written on the basis (...) of practical experience acquired over many years of using Internet resources in the context of teaching undergraduate and postgraduate courses in the social sciences covering a wide range of topic specialisms, and in informing academic staff. In addition to extensive coverage of topics relating to the efficient location of files and Web sites, Part III provides a substantial and annotated list of high quality resources likely to be of use to students of psychology. The work is structured so that it will be found useful by both beginners and intermediate level users, and be of continuing use over the course of higher education studies. (shrink)

BackgroundIn the last 2 weeks of January 2021, Portugal was the worst country in the world in incidence of infections and deaths due to COVID-19. As a result, the pressure on the healthcare system increased exponentially, exceeding its capacities and leaving hospitals in near collapse. This scenario caused multiple constraints, particularly for hospital medical staff. Previous studies conducted at different moments during the pandemic reported that COVID-19 has had significant negative impacts on healthcare workers’ psychological health, including stress, anxiety, depression, (...) burnout, post-traumatic stress symptoms, and sleep disturbances. However, there are many uncertainties regarding the professional quality of life of hospital nurses and physicians. To address gaps in previous research on secondary traumatic stress, we focused on healthcare workers working in hospitals affected by a major traumatic event: the third wave of COVID-19.ObjectivesThe aim of the present study was to identify the contribution of personal and work-related contextual variables on professional quality of life of healthcare workers.MethodsCross-sectional study with a web-based questionnaire given to physicians and nurses working in a hospital setting. A total of 853 healthcare professionals participated in the survey assessing professional quality of life compassion satisfaction, secondary traumatic stress, and burnout. Factors of professional quality of life were assessed using regression analysis.ResultsMost of the participants showed moderate or high levels of compassion satisfaction, whereas the majority of them experienced moderate levels of burnout and secondary traumatic stress. The analyzed variables demonstrated no differences between professionals who were directly or not involved in the care of COVID-19 patients. Parental status was found to be a significant factor in compassion satisfaction. Female gender was significantly associated with more susceptibility to secondary traumatization. Factors that may potentially contribute to burnout include years of professional experience and the number of work hours per week.ConclusionThe COVID-19 pandemic has created a new challenge for the healthcare system. Burnout and secondary traumatic stress can lead to medical errors and impact standards of patient care, particularly compromising compassionate care. It is therefore recommended that hospitals develop psychoeducational initiatives to support professionals in dealing with barriers to compassion. (shrink)

The flipped learning approach with the use of social media as an emerging technology has changed the quality of learning in English as a Foreign Language educational contexts. This review probed the effect of the web-based flipped learning approach on learners’ engagement and critical thinking. The earlier studies revealed the significance of social media in developing learner engagement and critical thinking. Studies indicated that the provision of opportunities for more cooperative and collaborative learning activities, and high-quality interaction through (...) the use of social media can be influential in developing learners’ engagement. Moreover, social media platforms can provide a context for feedback, and various types of challenging tasks that can improve EFL learners’ critical thinking. However, this review implicated that social media in flipped learning approach may be beneficial for instructors, learners, teacher educators, curriculum designers, educational policy-makers, and advisors to be aware of this valuable learner-centered approach. (shrink)

As web instruction becomes more and more prevalent at universities across the country, instructors of ethics are being encouraged to develop online courses to meet the needs of a diverse array of students. Web instruction is often viewed as a cost-saving technique, where large numbers of students can be reached by distance education in an effort to conserve classroom and instructor resources. In practice, however, the reverse is often true: online courses require more of faculty time and effort than do (...) many traditional classes. Based on personal experience teaching an online course in health care ethics for students in the Allied Health Professions, it is evident that there are both benefits and challenges in teaching online courses, particularly in ethics. Examples of benefits are (1) the asynchronous nature of web instruction allows students to progress through the course at their own pace and at times that are convenient given their clinical responsibilities; (2) web courses allow for a standardization of content and quality of instruction over a diversity of programs; and (3) examples can be tailored to the differing experiences of students in the course. Some challenges to teaching online ethics courses include (1) the fact that online instruction benefits visual learners and disadvantages those lacking good reading comprehension or strong writing skills; (2) developing meaningful student-student and student-instructor interaction; and (3) teaching ethics involves teaching a process rather than a product. Allowing students to apply their knowledge to real-world cases in their disciplines and encouraging them to share experiences from clinical practice is an effective way to meet several of these challenges. Building an online community is another good way to increase the interaction of students and their engagement with the material. (shrink)

Many educators today recognise the importance of online data sources for all sorts of research and writing projects. Some now permit students to include online sources in their work and others actually require their use. There are abundant resources available online, including real-time video; radio stations from around the world; reference tools, such as encyclopaedias, dictionaries, thesauri and collections of quotes; libraries of poetry, short stories, images and music; critical studies and research articles on every conceivable topic; information about authors (...) and historical figures; government and public policy data; current events; interactive software; and much, much more. At the same time, most users quickly see the problems that arise. Issues of privacy, plagiarism, pornography, hate sites, commercialism and simply wasting time arise regardless of the topic. The abundance soon yields thousands of Websites of dubious quality and relevance. (shrink)

Cybervetting has become common practice in personnel decision-making processes of organizations. While it represents a quick and inexpensive way of obtaining additional information on employees and applicants, it gives rise to a variety of legal and ethical concerns. To limit companies’ access to personal information, a _right to be forgotten_ has been introduced by the European jurisprudence. By discussing the notion of forgetting from the perspective of French hermeneutic philosopher Paul Ricoeur, the present article demonstrates that both, companies and employees, (...) would be harmed if access to online information on applicants and current employees would be denied. Consistent with a Humanistic Management approach that promotes human dignity and flourishing in the workplace, this article proposes guidance for the responsible handling of unpleasant online memories in personnel decision-making processes, thereby following Ricoeur’s notion of forgetting as “kept in reserve”. Enabling applicants and employees to take a qualified stand on their past is more beneficial to both sides than a right to be forgotten that is questionable in several respects. (shrink)

Corporate social responsibility (CSR) has become a much-discussed subject in the business world. The Internet has become one of the main tools for CSR information disclosure, allowing companies to publicise more information less expensively and faster than ever before. As a result, corporations are increasingly concerned with communicating ethically and responsibly to the diversity of stakeholders through the web. This paper addresses the main question as whether CSR information disclosure on corporate websites is influenced by country of origin and/or industry (...) sector. Analysing the websites of 127 corporations from emerging countries, such as Brazil, Chile, China, India, Indonesia, Mexico, Thailand and South Africa, it becomes evident that both country of origin and industry sector have a significant influence over CSR information disclosure on the web (CSRIDOW). Based on the data studied, country of origin has a stronger influence over CSRIDOW than industry sector. (shrink)

Corporate social responsibility has become a much-discussed subject in the business world. The Internet has become one of the main tools for CSR information disclosure, allowing companies to publicise more information less expensively and faster than ever before. As a result, corporations are increasingly concerned with communicating ethically and responsibly to the diversity of stakeholders through the web. This paper addresses the main question as whether CSR information disclosure on corporate websites is influenced by country of origin and/or industry sector. (...) Analysing the websites of 127 corporations from emerging countries, such as Brazil, Chile, China, India, Indonesia, Mexico, Thailand and South Africa, it becomes evident that both country of origin and industry sector have a significant influence over CSR information disclosure on the web . Based on the data studied, country of origin has a stronger influence over CSRIDOW than industry sector. (shrink)

Educational web quest is an example of the introduction of the Internet in the learning process. Using the web quest as a pedagogical technology allows students to form and develop competencies in the use of information and communication technologies in the performance of educational tasks, research skills, skills of analysis and systematization of information received, teamwork skills and responsibility for the quality of their training. The article describes the didactic possibilities of an educational web quest in the educational process (...) of College students. (shrink)

Since 2013, Vietnam has implemented a plan to reform the whole education sector. However, there is little understanding on the status of educational research in Vietnam, which may lay the foundation for such plan. Thus, this research aims to analyze the whole picture of educational research from Vietnam, as seen from the Clarivate Web of Science (WOS) database: 215 publications were recorded, ranging from 1991 to 2018. These 215 publications were further analyzed from five perspectives: 1) number of publications by (...) year; 2) research fields and levels of education; 3) top institutions with the highest number of publications; 4) international collaboration; and 5) quality. Some of the most notable results are: 1) the educational sciences in Vietnam have been still under-developed until recently; 2) among different research topics research among educational sciences, some (e.g., Vocational Education and Training or Early Childhood Education) seemed to be overlooked whereas others (e.g., Higher Education and Teaching and Learning) seemed to receive more attention from educational scholars; 3) all the most major education – specialized universities did not appear among the top five institutions with highest number of publications; 4) Australia, Thailand, the USA, New Zealand and China were the countries with the highest number of co-publications with Vietnamese researchers; and 5) The majority of publications belonged to low-ranked journals. Implications would be withdrawn for Vietnamese policymakers, education leaders, educational researchers and teachers in order to adjust their policies and/or action plans; thus, enhancing the performance and impacts of educational research in the future. (shrink)

Purpose: Explore public attitudes towards the trade-offs between justice and medical outcome inherent in organ allocation decisions.Background: The US Task Force on Organ Transplantation recommended that considerations of justice, autonomy and medical outcome be part of all organ allocation decisions. Justice in this context may be modeled as a function of three types of need, related to age, clinical urgency, and quality of life.Methods: A web-based survey was conducted in which respondents were asked to choose between two hypothetical patients (...) who differed in clinical urgency , age, pretransplant and post-transplant quality of life, and life expectancy.Results: A pool of 1600 people were notified via email about the survey; 623 responded. Respondents preferred giving organs to younger people up to an age difference of <15.4 years and more clinically urgent people up to a difference in urgency of <2.54 months . Priority varied with the quality of life of the worst-off patient and the relative status of the patients. If both had worse than average quality of life, respondents preferred the better-off patient. When both had better than average quality of life, they preferred the worse-off patient. In analysis according to age versus clinical urgency, the older the patient, the more urgency needed to receive priority. In quality of life versus clinical urgency, the better the control’s quality of life, the more urgency the competing patient required. The worse the patient’s post-transplant outcome, the more urgency needed to receive priority.Conclusions: It appears that clinical urgency is only one of many factors influencing attitudes about allocation decisions and that respondents may invoke different principles of fairness depending the relative clinical status of patients. (shrink)

Quality of life is an important outcome measure in mental health care. Currently, QoL is mainly measured with paper and pencil questionnaires. To contribute to the evaluation of treatment, and to enhance substantiated policy decisions in the allocation of resources, a web-based, personalized, patient-friendly and easy to administer QoL instrument has been developed: the QoL-ME. While human values play a significant role in shaping future use practices of technologies, it is important to anticipate on them during the design of (...) the QoL-instrument. The value sensitive design approach offers a theory and method for addressing these values in a systematic and principled manner in the design of technologies. While the VSD approach has been applied in the field of somatic care, we extended the VSD approach to the field of mental healthcare with the aim to enable developers of the QoL-instrument to reflect on important human values and anticipate potential value conflicts in its design. We therefore explored how VSD can be used by investigating the human values that are relevant for the design of the QoL-ME. Our exploration reveals that the values autonomy, efficiency, empowerment, universal usability, privacy, redifinition of roles, of responsibilites, reliability, solidarity, surveillance and trust are at stake for the future users of the technology. However, we argue that theoretical reflections on the potential ethical impact of a technology in the design phase can only go so far. To be able to comprehensively evaluate the usability the VSD approach, a supplementary study of the use practices of the technology is needed. (shrink)

Web sites of the 50 state legislatures are evaluated on five criteria: content, usability, interactivity, transparency, and audience. An overall quality score for each site was computed. The evaluation revealed a wide range of quality in the sites, including that of features or aspects that could possibly foster citizen participation. The higher rated sites help define “best practices” in this regard and provide suggestions as to how other states' sites might make improvements and possibly increase participation.

This paper explores the Hizb ut Tahrir web forum by developing a coding and counting methodology that seeks to split opinions on the forum into categories and to rate them by their quality and by how much they were viewed. This methodology is innovative and enables the identification not just of the most aired topic, but of the one that is most likely to have an influence. It finds that the strongest type of posting (as defined by the methodology (...) employed) comes from those with extremely anti-Western opinion and that terrorism and other violence also feature. Explicit mention of violence is dwarfed by the amount of anti-western posting that does not include a call to violent action. However, the forum probably provides a rich seed-bed in which such violent conversations can occur. Whilst the forum does contain some alternative opinions, these are very minor voices on an otherwise quite extreme forum. Although the paper does not make policy recommendations, there are potential policy implications of this, especially in terms of ongoing discussions in the western world over whether or not to ban the movement. (shrink)

Purpose: Explore public attitudes towards the trade-offs between justice and medical outcome inherent in organ allocation decisions.Background: The US Task Force on Organ Transplantation recommended that considerations of justice, autonomy and medical outcome be part of all organ allocation decisions. Justice in this context may be modeled as a function of three types of need, related to age, clinical urgency, and quality of life.Methods: A web-based survey was conducted in which respondents were asked to choose between two hypothetical patients (...) who differed in clinical urgency , age, pretransplant and post-transplant quality of life, and life expectancy.Results: A pool of 1600 people were notified via email about the survey; 623 responded. Respondents preferred giving organs to younger people up to an age difference of <15.4 years and more clinically urgent people up to a difference in urgency of <2.54 months . Priority varied with the quality of life of the worst-off patient and the relative status of the patients. If both had worse than average quality of life, respondents preferred the better-off patient. When both had better than average quality of life, they preferred the worse-off patient. In analysis according to age versus clinical urgency, the older the patient, the more urgency needed to receive priority. In quality of life versus clinical urgency, the better the control’s quality of life, the more urgency the competing patient required. The worse the patient’s post-transplant outcome, the more urgency needed to receive priority.Conclusions: It appears that clinical urgency is only one of many factors influencing attitudes about allocation decisions and that respondents may invoke different principles of fairness depending the relative clinical status of patients. (shrink)

For decision making in government, it is necessary to have well-structured sources of information. In several countries, it is difficult to access government data as the information are dispersed, disconnected, and poorly structured. For this reason, this work presents a framework to gather, unify, and enrich missing person data from distributed web sources. The framework allows inserting new tasks specific to the user’s domain to improve data quality. In this study, Brazilian missing person data from non-governmental organizations (NGOs) and (...) governmental websites were collected and semantically enriched. To enhance the understanding of the gathered missing people cases, we create interpretive models using machine learning techniques to extract knowledge and to encourage the use of standards for publishing the data that are frequently ignored by organizations, hindering analysis and decision-making on data. After the collection and semantic enrichment process, there was an increase of approximately 11% in the data present in the base. Also, the mining process evidenced the disappearance and reappearance of a person in Brazil according to several factors such as age, state initiatives, skin tone, hair colors, etc. (shrink)

The idea of the Internet as Gutenberg 2.0—a true revolution in disseminating information—is now a routine part of how bioethics education works. The Internet has become indispensable as a channel for sharing teaching materials and connecting learners with a central platform that houses materials to support an online or hybrid curriculum or a traditional course. A newer idea in bioethics education reflects developments in web-based medical education more broadly and draws on design principles developed for the Internet. This approach to (...) online bioethics education requires thinking about web-based learning as an engaging, potentially immersive experience, about learners' expectations concerning web-based learning, and about differences between self-directed learning and teaching to support group learning. In clinician education in bioethics, the interrelated goals of ethical reflection and practice for professionals and of continuous quality improvement in health care are supported by a focus on real-world challenges and by encouraging the habits of self-directed learning. In this paper, we describe how an international, interdisciplinary team used a web-based framework to develop a health care ethics casebook whose content, design, and pedagogy were tailored to the needs and expectations of health care professionals and other audiences in Singapore; we also explain how they used this framework to make the casebook accessible nationwide and to support cross-cultural learning. (shrink)

Purpose – The purpose of this paper is to present a descriptive literature review and a classification scheme for studies on sustainable development, e-learning and Web 3.0 that contribute toward sustainable e-learning. The aims are to discover and highlight some ideas on developing a sustainable learning in higher education in Malaysia. Design/methodology/approach – The paper examines the elements of e-learning, technology, application, sustainable development and teaching and learning principles that contribute toward a sustainable e-learning through a descriptive literature review approach (...) and a classification scheme. Findings – The findings show that even though sustainable e-learning research is still limited, contributions to sustainable e-learning were recognized and some ideas and perspectives for the development of a sustainable e-learning framework were identified. Furthermore, this paper identified the gaps in the findings; therefore, this paper will try to minimize these gaps through the initial sustainable e-learning framework. Originality/value – The paper is expected to provide further ideas of developing a sustainable e-learning framework, as well as the importance of a sustainable e-learning to provide quality learning through technology, application, sustainable development and teaching and learning principles perspectives. (shrink)

PurposeThis paper attempts to recognize the informational needs of women who suffer from intimate partner violence. It then presents a model of a web site that may answer to these needs.Design/methodology/approachFirst, the paper defines the phases women suffering from IPV go through. This is done by surveying the literature that describes the stages these women experience. In order to clarify the proposed model, the paper then describe our own set of phases based on the above literature. Once the phases mentioned (...) above are understood, the needs of these women become evident, thus allowing us to define and specify them. The model of the web site is then described and the paper shows how it relates to the various aforementioned needs.FindingsThe web site would offer a variety of information, such as: names of organizations that offer support, chats, and forums that provide emotional support and advice from women who experienced abuse in the past as well as from professionals.Research limitations/implicationsSecurity issues of this model need to be researched before applying it to use, as they are beyond the scope of this paper. Such issues should include techniques for erasing the user's traces and for keeping out “unwelcome visitors.”Originality/valueThis model, if applied, may greatly aid women suffering from IPV, as it would provide them with the emotional support and technical information they need in order to make important decisions regarding their situation. Information, if utilized, may give these women the ability to control their fate and actively improve their quality of life. (shrink)

Floridi’s work, although diverse and multifaceted, portrays a solid coherence across his different lines of work. Among his wealth of interests and results, we highlight his recent work on information logics, on the ethics of information technology, and his rigorous (and vigorous) philosophical analysis of recent technological trends and developments in information technology. In the present article we illustrate, by means of some connecting arguments, the diversity and coherence of Floridi’s work. We also show how his work, although fundamentally philosophical (...) in nature, can be used to build solid foundations for scientific and entrepreneurial endeavours of higher quality. More specifically, we discuss how the combination of results from the three lines of work referred to above can be used as ground for the organisation of higher quality programmes to augment the capabilities and effectiveness of governmental systems through information and communications technology, a trend that has been explored in many nations and that has been coined Electronic Government. Electronic Government programmes that improve the capabilities of citizens to interact with each other and with governments, as well as the capabilities of governments to listen to the needs and aspirations of citizens, have the potential to contribute to the construction of more democratic states. Electronic Government systems that rely on ready made models to prescribe to citizens how best they should interact with each other and with the public administration are, however, by construction non-democratic. Hence, it can be a moral and ethical matter for governments to choose which line of technological development they take. (shrink)

Observation of online forums is a relevant methodological approach for researchers in several disciplines. However, ethical guidelines on such observations challenge the ethically concerned researcher. In this paper, I reflect on how I carried out my observation of an online weight-loss forum, and how I could have conducted it differently to meet ethical standards and the demands of high-quality research. After receiving approval from the forum administrators to observe the forum, information about my project on obesity was posted online. (...) Some of the participants reacted negatively to my presence in the forum. This paper draws on the evolving discussion between researcher and participants on the complex issue of research ethics, particularly informed consent, in studying closed forums on the Internet. It is suggested that evaluating whether participants are harmed is more important than the public/private divide when considering whether informed consent is necessary. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and (...) informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent and (...) informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

The purpose of this study was to examine the effectiveness of a neuro-meditation program to support nurses during the COVID-19 pandemic. Forty-five nurses were classified into three groups based on their systolic blood pressure: normotensive, hypertensive and control. Using a parallel, randomly controlled design across a 4-week period, 10 × 30-min sessions using the Rebalance© Impulse were completed. Sleep was assessed by wrist actigraphy and subjective sleep questionnaires; perceived sleep quality, Ford Insomnia Response to Stress Test questionnaire and the (...) Spiegel Sleep Quality questionnaire. Blood pressure, resting heart rate, mean heart rate, heart rate variability index, cortisol, and alpha-amylase were also measured. Statistical analysis was completed using factorial ANOVA. Sleep improved in the G-hyp group; SSQ ; perceived sleep quality ; sleep efficiency and fragmentation index. In the G-nor group, sleep was improved to a lesser extent; perceived sleep quality. A significant time–group interaction was reported in resting heart rate, systolic blood pressure, and diastolic blood pressure with these measures being significantly reduced in the G-hyp group. RMSSD increased in the G-nor group. This initial evidence suggests that neuro-meditation reduces excessive sympathetic activity, promoting enhanced sleep quality and autonomic control during periods of increased work-related stress.Clinical Trial RegistrationThe study was conducted at Bioesterel, Sophia-Antipolis, France as a clinical trial: Neuro-meditation improves sleep quality, https://www.drks.de/ui_data_web/DrksUI.html?locale=en, DRKS00025731. (shrink)

This paper investigates the correlation between the quality of corporate social responsibility disclosure and financial performance. It also investigates the moderating role of chief executive officer power in the relationship between the quality of CSR disclosure and firm value in Chinese listed companies. The evidential research used the up-to-date sample of unbalanced findings for the period of 2014–2020, from the registered Chinese firms in the Shenzhen and Shanghai Stock Exchanges as samples for the study. As a starting point (...) technique, the STATA 15 has been used to test pooled ordinary least squares regression on a sample of Chinese listed companies. We use 1-year lagged regression and two SLS regressions to monitor the potential endogeneity problem. The imbalanced data set was received from the China Stock Market and Accounting Research web page, which is the most significant source of information for Chinese publicly listed firms. Data on CSR information items and media reporting are compiled manually. The findings of the study revealed that there are positive FP consequences for the companies engaged in the quality of CSR disclosure. We also report that higher CEO power negatively enhances the quality of CSR disclosure effect on the FP of FV. The research investigates the impact of CSR disclosure and FP by presenting evidence of the moderating role of CEO power. Therefore, it is suggested that a higher law for CSR engagement and disclosure be implemented in China, and robust measures for the implementation of CEO power, although there are financial advantages to be gained. A key relevance to the empirical quality of CSR disclosure research can be recognized as the moderating role of CEO power in the quality of CSR disclosure, FP, and FV in the context of Chinese study. The findings are robust with the use of an instrumental variable method. (shrink)