Directive 96/9/EC of the European Parliament and of the Council on the legal protection of databases of 11 March 1996, which was intended to protect the interests of the makers of databases, determined that databases could be protected by double rights: copyright and sui generis right. The article first of all analyses what persons are entitled to be acknowledged as holders of copyright and sui generis right in respect of a newly created database. As the issue of the owner (...) of copyright is not regulated by the 1996 Directive, this is determined by the application of national provisions. Pursuant to the Law on Copyright and Related Rights of the Republic of Lithuania, the owner of copyright may mean, depending on the situation, a natural person – the author of a database or a group of authors, the holder of the right to a collective work, or an employer. The analysis presented in the articleindicates that predominantly it is the author (authors) of a database who is held to be the owner of the copyright. Courts tend to interpret the rule concerning the transfer of copyright to the employer in a restrictive way; besides, in accordance with the specifics of the Lithuanian legal regulation, economic rights are transferred to the employer only for the period of 5 years. The category of collective work is of a subsidiary character and may be applied only in exclusive cases. Therefore, when a database is created upon the commission of another person, including the employer, the customer is expected to form a written agreement where the transfer of economic rights to the customer is clearly defined. (shrink)

Biobanks that are run on an opt-in basis depend on people having the motivation to give and to trust in those who control their samples. Yet in the UK trust in the healthcare system has been in decline and there have been a number of health-related scandals that have received widespread media and public attention. Given this background, and the previous public consultations on UK Biobank, the paper explores the way people express their trust and mistrust in the area of (...) medical and genetic information through discussions in six focus groups held in different areas of Britain. The themes that emerged in the discussion were the special character of genetic data; the ease with which information spreads; the public/private divide in genetic research; the potential of genetic information to harm people; choice, consent and lack of control; and the difficulty of establishing trustworthy governing arrangements. The expert agenda of policy-makers and medical ethics does not address the broader concerns expressed by participants. It seems that public consultation and the language of openness and transparency may not be sufficient to establish trust in the governance of genetic databases. Donors will be asked to give freely without any return but the participants' perception of those using the samples is that they are motivated by success and profit rather than healthcare priorities. In this context altruism seems naive and even dangerous. In order to place their trust well people need evidence of a relationship with obligations and expectations on both sides. (shrink)

This article’s aim is to understand if and how the efforts to accumulate and organize clinical data transformed the regulation of pharmaceutical care. The authors analyze how the employment of databases by collectives of physicians and researchers shape both clinical and policy practice—and thereby reshape the relation between clinical work and policy. Since the late 1990s, Dutch government has supported the development of clinical databases for specific expensive medicines to gain oversight about actual medicine use. To be able to produce (...) evidence for appropriate medicine use, the collectives set regulations in clinical practice. These internal regulations provide a framework for establishing “appropriate medicine use”, steering reimbursement decisions. However, internal regulation and policy rules differ in how quickly they can change. While the employment of databases in clinical practices results in a constant adjustment of the protocols, policy makers require the databases to provide for static moments of “proven appropriate medicine use” in order to account for and define a fixed and closed formulary. Subsequently, the employment of the databases did not deliver on the promise of oversight and control due to different clinical and policy requirements. Nevertheless, the databases did stimulate appropriate medicine use and reimbursement in clinical practice. (shrink)

Purpose The purpose of this paper is to present a systematic literature review of empirical studies into online platforms for political participation. The objective was to diagnose the relationship between different types of digital participatory platforms, the real possibilities of participation generated by those initiatives and the impact of such participation on the decision-making process of governmental representatives. Design/methodology/approach A systematic literature review was conducted using pre-defined terms, expressions and criteria. A total of 434 articles from 1995 to 2015 were (...) gathered from the Web of Science database. And, 32 studies were selected from those articles for meta-synthesis, and the cases investigated were evaluated according to the e-participation ladder model. Findings The results indicated that online political participation worldwide remains timid both in quantity and quality. We have witnessed the growth of a kind of “rhetorical participation” promoted by policy-makers and the rise of a “participatory despotism”, in which only the privileged partake, while the majority remains silent. Practical implications The solutions found to promote increased participation and ensure its effectiveness ranged from shaping the platform design in accordance with citizens’ capacities and interests to a need for profound political–administrative change, which includes the world’s public agencies adopting a more transparent, inclusive and collaborative approach to decision-making. Originality/value This paper proposes a systematic review, mapping the studies on online platforms for political participation, analysing the questions, methods and conclusions found by the authors and evaluating each case study with a participation ladder. (shrink)

This article is part of a wider study entitled Value of Nursing, and contains the literature search from electronic databases. Key words for the search included `values of nursing', `values in nursing', `organisational values' and `professional identity'. Thirty-two primary reports published in English between 2000 and 2006 were identified. The findings highlight the importance of understanding values and their relevance in nursing and how values are constructed. The value of nursing is seen to be influenced by cultural change, globalization, and (...) advancement in technology and medicine. These factors are crucial in providing a more structured and measured view of what nursing is, which will result in greater job satisfaction among nurses, better nurse retention and enhanced patient care within a supportive and harmonious organization. The findings of this review have implications for policy makers in recruitment and retention in determining the global value of nursing. (shrink)

This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming ‘co-decision makers’ (...) in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research. (shrink)

Background: Use of patients’ medical data for secondary purposes such as health research, audit, and service planning is well established in the UK. However, the governance environment, as well as public understanding about this work, have lagged behind. We aimed to systematically review the literature on UK and Irish public views of patient data used in research, critically analysing such views though an established biomedical ethics framework, to draw out potential strategies for future good practice guidance and inform ethical and (...) privacy debates. Methods: We searched three databases using terms such as patient, public, opinion, and electronic health records. Empirical studies were eligible for inclusion if they surveyed healthcare users, patients or the public in UK and Ireland and examined attitudes, opinions or beliefs about the use of patient data for medical research. Results were synthesised into broad themes using a framework analysis. Results: Out of 13,492 papers and reports screened, 20 papers or reports were eligible. While there was a widespread willingness to share patient data for research for the common good, this very rarely led to unqualified support. The public expressed two generalised concerns about the potential risks to their privacy. The first of these concerns related to a party’s competence in keeping data secure, while the second was associated with the motivation a party might have to use the data. Conclusions: The public evaluates trustworthiness of research organisations by assessing their competence in data-handling and motivation for accessing the data. Public attitudes around data-sharing exemplified several principles which are also widely accepted in biomedical ethics. This provides a framework for understanding public attitudes, which should be considered in the development in any guidance for regulators and data custodians. We propose four salient questions which decision makers should address when evaluating proposals for the secondary use of data. (shrink)

The Political Economy of Terrorism presents a widely accessible political economy approach to the study of terrorism. It applies economic methodology – theoretical and empirical – combined with political analysis and realities to the study of domestic and transnational terrorism. In so doing, the book provides both a qualitative and quantitative investigation of terrorism in a balanced up-to-date presentation that informs students, policy makers, researchers and the general reader of the current state of knowledge. Included are historical aspects, a discussion (...) of watershed events, the rise of modern-day terrorism, examination of current trends, the dilemma of liberal democracies, evaluation of counterterrorism, analysis of hostage incidents and much more. The new edition expands coverage of every chapter, adds a new chapter on terrorist network structures and organization, accounts for changes in the Department of Homeland Security and the USA Patriot Act and insurance against terrorism. Rational-actor models of terrorist and government behavior and game-theoretic analysis are presented for readers with no prior theoretical training. Where relevant, the authors display graphs using data from International Terrorism: Attributes of Terrorist Events, the Global Terrorism Database, and other public-access data sets. (shrink)

Community databases have become crucial to the collection, ordering and retrieval of data gathered on model organisms, as well as to the ways in which these data are interpreted and used across a range of research contexts. This paper analyses the impact of community databases on research practices in model organism biology by focusing on the history and current use of four community databases: FlyBase, Mouse Genome Informatics, WormBase and The Arabidopsis Information Resource. We discuss the standards used by the (...) curators of these databases for what counts as reliable evidence, acceptable terminology, appropriate experimental set-ups and adequate materials (e.g., specimens). On the one hand, these choices are informed by the collaborative research ethos characterising most model organism communities. On the other hand, the deployment of these standards in databases reinforces this ethos and gives it concrete and precise instantiations by shaping the skills, practices, values and background knowledge required of the database users. We conclude that the increasing reliance on community databases as vehicles to circulate data is having a major impact on how researchers conduct and communicate their research, which affects how they understand the biology of model organisms and its relation to the biology of other species. (shrink)

Background Abortion is one of the most common gynaecological procedures. It is related to personal, social, and economic reasons under a legal term that is recognised as a common sexual and reproductive right in most of countries. However, making the decision to abort is complex, because it is politicised and is often framed in public discourse related to moral or ethical issues beyond women’s experiences. Therefore, it is subject to medical criteria, religious evaluations, and sociological analysis. Purpouse The aim of (...) this synthesis of qualitative studies was to synthesise the decision-making experiences of women who legally aborted. Research design and method The Noblit and Hare’s interpretive meta‐ethnography was conducted, and it was written in accordance with the eMERGe meta‐ethnography reporting guidance. Ten studies met the research objective and inclusion criteria, after a comprehensive systematic search strategy in five databases. Findings The metaphor “The wrestling between why and what will happen next” and three themes emerged from the data analysis: (1) Forces that incite the arm wrestling; (2) Facing social stigma; and (3) Defeated by a greater rival. The metaphor provided interpretive experiences of the moral conflict experienced by women who decided to have an abortion and emerged from the confrontation of the reasons why they decided to abort and the social repercussions that making the decision entails. The result of the struggle was loneliness and vulnerability. Conclusion The lines of action impact policy makers, the media, and health professionals. Actions should focus on the de-stigmatisation and normalisation of abortion, the use of appropriate language, and the training and sensitisation of health professionals. (shrink)

The proliferation of electronic databases has given rise to many practices and occurrences that pose serious threats to personal privacy. This paper argues that attention to privacy should be an integral part of the database design process, and that database designers are uniquely positioned to ensure that this happens. To motivate students to become privacy‐conscious database design professionals, computer science programs must meet the challenges of implementing an “ethics across the curriculum” methodology to integrate privacy content throughout (...) the design thread of the introductory database course. (shrink)

Georg Simmel’s treatment of the lie – in the essay ‘The Sociology of Secrecy and Secret Societies’, but in other, lesser known texts as well – is an aspect of his thought that has not received a great deal of attention among theorists. And yet many of his better known contributions to social theory – including his concepts of ‘interaction’ and ‘sociation’, his appreciation of the spatial and the aesthetic dimensions of social life, and his speculations about culture and subjectivity (...) in the modern world – draw on ideas that he developed while contemplating the problem of deception. In this article, I bring Simmel’s work on mendacity to the fore, and show how a consideration of it sheds new light on some of his most familiar claims. I further argue that Simmel’s work on the lie illuminates a very old and vexing set of philosophical debates, and especially the debate over self-deception, or whether or not it is possible to lie to oneself. Along with providing a close study of his comments on the lie in ‘The Sociology of Secrecy and Secret Societies’, and in the chapter of his monumental Sociology that is based on that essay, I propose a reading of Simmel’s heretofore ignored fable or fairytale ‘Der Lügenmacher’ – one of the eight short pieces that he published pseudonymously between 1899 and 1903 in the cultural journal Der Jugend under the heading ‘ Momentbilder’ or ‘Snapshots, sub specie aeternitatis’. (shrink)

In his short life, Alan Turing (1912-1954) made foundational contributions to philosophy, mathematics, biology, artificial intelligence, and computer science. He, as much as anyone, invented the digital electronic computer. From September, 1939 much of his work on computation was war-driven and brutally practical. He developed high speed computing devices needed to decipher German Enigma Machine messages to and from U-boats, countering the most serious threat by far to Britain's survival during World War Two. Yet few people have an image of (...) him. (shrink)

This handbook presents the state of the art of quantitative methods and models to understand and assess the science and technology system. Focusing on various aspects of the development and application of indicators derived from data on scholarly publications, patents and electronic communications, the individual chapters, written by leading experts, discuss theoretical and methodological issues, illustrate applications, highlight their policy context and relevance, and point to future research directions. A substantial portion of the book is dedicated to detailed descriptions and (...) analyses of data sources, presenting both traditional and advanced approaches. It addresses the main bibliographic metrics and indexes, such as the journal impact factor and the h-index, as well as altmetric and webometric indicators and science mapping techniques on different levels of aggregation and in the context of their value for the assessment of research performance as well as their impact on research policy and society. It also presents and critically discusses various national research evaluation systems. Complementing the sections reflecting on the science system, the technology section includes multiple chapters that explain different aspects of patent statistics, patent classification and database search methods to retrieve patent-related information. In addition, it examines the relevance of trademarks and standards as additional technological indicators. The Springer Handbook of Science and Technology Indicators is an invaluable resource for practitioners, scientists and policy makers wanting a systematic and thorough analysis of the potential and limitations of the various approaches to assess research and research performance. (shrink)

This article seeks explore the complex relations between Beauty and the Sublime. The exploration is guided by two very powerful, but very different, thinkers: Swiss Catholic metaphysical theologian Hans Urs von Balthasat and American naturalist metaphysician Robert S. Corrington. Through reflection upon von Balthasar’s themes of Beauty, Splendor and Being and Corrington’s themes of the Sublime and the Encompassing it is hoped implications of the complex relations between Beauty and the Sublime might be evoked and engaged.

Objectives: Technology can assist and support both people with dementia and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case of further (...) pandemic waves.Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010.Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged.Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization. (shrink)

For the people who make them, music recommender systems hold a utopian promise: they can broaden listeners' horizons and help obscure musicians find audiences, taking advantage of the enormous catalogs offered by companies like Spotify, Apple Music, and their kin. But for critics, recommender systems have come to epitomize the potential harms of algorithms: they seem to reduce expressive culture to numbers, they normalize ever-broadening data collection, and they profile their users for commercial ends, tearing the social fabric into isolated (...) patches of atomized individuals. Drawing on years of ethnographic fieldwork, anthropologist Nick Seaver offers an account of how the makers of music recommendation navigate these tensions: how product managers understand their relationship with the users they want to help and to capture, how engineers imagine the abstract geography of the "world of music" as a space they control and care for, how scientists conceive of listening itself as a kind of data processing. The book rehumanizes the algorithmic systems that shape our world, foregrounding the ideas animating the people who build and maintain them. Seaver braids together the thinking of programmers and anthropologists, opening up the cultural world of computation in a vividly theorized book that ranges widely from cosmology to calculation, metaphor to myth, and captivation to care. (shrink)

This study investigated the status quo of article retractions by Chinese researchers. The bibliometric information of 834 retractions from the Web of Science SCI-expanded database were downloaded and analysed. The results showed that the number of retractions increased in the past two decades, and misconduct such as plagiarism, fraud, and faked peer review explained approximately three quarters of the retractions. Meanwhile, a large proportion of the retractions seemed typical of deliberate fraud, which might be evidenced by retractions authored by (...) repeat offenders of data fraud and those due to faked peer review. In addition, a majority of Chinese fraudulent authors seemed to aim their articles which contained a possible misconduct at low-impact journals, regardless of the types of misconduct. The system of scientific evaluation, the “publish or perish” pressure Chinese researchers are facing, and the relatively low costs of scientific integrity may be responsible for the scientific integrity. We suggested more integrity education and severe sanctions for the policy-makers, as well as change in the peer review system and transparent retraction notices for journal administrators. (shrink)

This is a book about religious transformation in South Asia in the nineteenth century, perhaps the most important period of religious change in the history of the region. By looking at some outstanding individuals from different religions the book sheds light on the questions that lie at the heart of later nationalist discourse, questions like: Who is a Hindu? Who is a Buddhist? What is the relationship between the religious communities of South Asia?

BackgroundClinical ethics consultations can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. ObjectiveThe primary (...) objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization.MethodsWe searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. ResultsForty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality, process factors, and clinical factors. The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes.ConclusionsThis scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in (...) pediatrics, to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)

Corruption in the construction industry is a serious problem in China. As such, fighting this corruption has become a priority target of the Chinese government, with the main effort being to discover and prosecute its perpetrators. This study profiles the demographic characteristics of major incidences of corruption in construction. It draws on the database of the 83 complete recorded cases of construction related corruption held by the Chinese National Bureau of Corruption Prevention. Categorical variables were drawn from the (...) class='Hi'>database, and ‘association rule mining analysis’ was used to identify associations between variables as a means of profiling perpetrators. Such profiling may be used as predictors of future incidences of corruption, and consequently to inform policy makers in their fight against corruption. The results signal corruption within the Chinese construction industry to be correlated with age, with incidences rising as managers’ approach retirement age. Moreover, a majority of perpetrators operate within government agencies, are department deputies in direct contact with projects, and extort the greatest amounts per case from second tier cities. The relatively lengthy average 6.4-year period before cases come to public attention corroborates the view that current efforts at fighting corruption remain inadequate. (shrink)

Over the last thirty years, once staunchly historical cinema scholars such as Thomas Elsaesser, Jane Gaines, Siegfried Zielinski, and André Gaudreault have abandoned history for historiography and film studies for media archaeology. With increasing attention on the “database” as a symbolic metaphor for postmodernity and the decentered, networked tenants of the global present, cinema is taking on the characteristics of new media, existing in intertextual space. Thus, the term “post-cinema” has been co-opted as a viable intermediary that accounts for (...) new media conditions, as cinema is no longer emblematic of our cultural climate. As Giorgio Agamben wrote in 1992, “[t]he end of the cinema truly sounds the death knell of the ultimate metaphysical adventure of Dasein. In the twilight of post-cinema…human quasi-existence, now stripped of any metaphysical hypostasis and deprived of any theological model, will have to seek its proper generic consistency elsewhere." Accordingly, we are no longer “moviegoing animals” who seek images of ourselves among a collective in the dark but, rather, users interfacing within a network of moving images. (shrink)

Dr. B. R. Ambedkar is one of the most eminent intellectual figures of modern India. The present year is being celebrated as 125th Birth Anniversary of Dr. B. R. Ambedkar. Educationist and humanist from all over the world are celebrating 125th Birth Anniversary of Dr. B. R. Ambedkar by organizing various events and programmes. In this regard the Centre for Positive Philosophy and Interdiscipinary Studies (CPPIS) Pehowa (Kurukshetra) took an initiative to be a part of this mega event by organizing (...) an national level esssay competition for students, publication of books, posters and research journals on Dr. B.R. Ambedkar. Dr. B.R. Ambedkar’s ideas, writings and outlook could well be characterized as belonging to that trend of thought called Social Humanism. He developed a socio-ethical philosophy and steadfastly stood for human dignity and freedom, socio-economic justice, material prosperity and spiritual discipline. He showed the enlightening path for Indian society via his ideals of freedom, equality and fraternity and made India a democratic country. The complete works of Dr. B.R. Ambedkar published by the Governemtn of Maharastra and it has taken about 25 years to complete this initiative in 21 Volumes with the name, “Dr. Babasaheb Ambedkar: Writing and Speeches” and covers 14000 pages. In the words of Trilochan Sing, “Above all, Dr. Ambedkar is a philosopher. Those who read his books cannot be failed to be impressed with steadffastness with which he pursues truth; and only those who have dispassionately read his books can frame true estimate of the greatness of the man”. These 21 Volumes includes books published by Dr. B.R. Ambedkar himself and unpublished writings and speaches too. The present volume entitled “Dr. B.R. Ambedkar: The Maker of Modern India” contains 12 research papers on the different aspects of philosophy of Dr. B.R. Ambedkar written by academicians from different branches of knowledge. You can find a variety of dialogues and concen about the theme of the book here. We are not defending this book as a highly an intellectual work but a smaller step to know the various aspects of this great personality and is a start to study his vast wisdom. You suggestions and comments are welcome to its first hand review version. (shrink)

Introduction. According to the well-established opinion of specialists in social sciences and humanities, a person diffracts his selves in the modern world: real spaces (professions, statuses) and virtual (accounts, profiles). In the diffraction of a person through spaces of different order, each “new” self acquires relative autonomy (a trace of the self in the network, which is present regardless of the attitude to it), and at the same time there remains the connection that, as it were, keeps the self with (...) his digital images and “prints”. The main questions of the article are: in what relation and in relation to what is it possible to talk about the identity of a modern person; what fundamentally significant do the researches on human identity give us today; what do those who ask questions about personal identity in the digital age focus their attention on? In order to answer these questions, let us turn to scientific articles from domestic and foreign journals. This article presents the analytics of publications from Scopus and RSCI databases, in which the problem of personal identity is posed. The purpose of the article is to analyze scientific publications on human identity and summarize the main ideas presented in those publications. Methods. The research is based on general scientific methods, analysis and synthesis, induction, deduction, and abstraction. The author analyzes scientific publications on the basis of the interpretation method and a systematic approach method. Content analysis was used as a method, but it was used within the scope of the purpose. The publications were selected on the basis of the authors’ research of various aspects of identity and the difference in interpreting the phenomenon. Results. Analysis of Scopus publications made it possible to assert that the problem of identity is moving out of the anthropological context and acquiring new technical and technological frameworks (for example, scholars are raising the problem of the digital data identity, digital identification in the context of online transactions). At the same time, the anthropological view of identity remains. It is found for instance in the context of narratives, texts of a person about self that are posted on the Internet. In this context, the concept of “Person Life View” (M. Schechtman) is presented as a variant of a person’s holistic view of the self. The analysis of domestic publications makes it possible to conclude that representatives of social sciences and humanities in their research strive to overcome the dynamic view of a person (dissolving of identity or an absent self), are in search of models of “stability” of identity. Conclusion. Posing the question about the personal identity of a modern person, it seems that the border between the directly human (consciousness and body, for example) and the technical and technological (the Internet and the objective world) is becoming more and more destabilized every day. This predetermines the direction of the research. Contemporary scholars, who publish the results of their work in journals included in scientific databases, are faced not only with the problem of substantiating human identity as a theoretical concept that reflects the modern situation, but also with the problem of finding models in which a person is able to embody the idea of “stability” of identity in the everyday life. (shrink)

Increasingly, medical records are being stored in computer databases that allow for efficiencies in providing treatment and in the processing of clinical and financial services. Computerization of medical records has also diminished patient privacy and, in particular, has increased the potential for misuse, especially in the form of nonconsensual secondary use of personally identifiable records. Organizations that store and use medical records have had to establish security measures, prompted partially by an inconsistent patchwork of legal standards that vary from state (...) to state. There is widespread appreciation among policy makers regarding the need for legal reform. The Health Information and Portability Accountability Act of 1996 mandated that the Administration develop regulations regarding the control of medical records. The Administration has offered regulations from the Department of Health and Human Services. Survey data reveal what healthcare professionals who have access to sensitive medical records believe are the greatest threats to patients' privacy. The overlap between Administration proposals and the responses of healthcare professionals is striking. (shrink)

What precisely resides in â oesexualityâ which warrants the popular discourse on sexuality as â oepart of our world freedom, â or something as an inspiring source for â oeour own creationâ of â oenew forms of relationshipsâ or â oenew forms of loveâ never before possible in human history? This popular treatment of sexual freedom has become so politically correct, in this day and age of ours, that it fast degenerates into a seductive ideology which has impoverished our understanding (...) of sexuality by blinding us from its dark sides. Contrary to this intoxicating conventional wisdom, the dark sides of this seductive ideology have yet to be systematically understood and that its very creative freedom is neither possible nor desirable to the extent that its advocates would like us to believe. Of course, this is not to suggest that sexuality should not be about freedom nor creativity, or that the literature in sexual studies (and other related fields like gender studies, queer studies, and cultural studies, for example) should be ignored because of their scholarly nonsense. Needless to say, neither of these two extreme views is reasonable either. Instead, the purpose of this book is to provide an alternative (better) way to understand the nature of sexuality, in special relation to the sexual body and spirit, in conjunction with the mindâ "while learning from different approaches in the literature but without favoring any one of them (nor integrating them, since they are not necessarily compatible with each other). This seminal project, if successful, will fundamentally change the way that we think about the nature of sexuality, from the combined perspectives of the mind, nature, society, and culture, with enormous implications for the human future and what I originally called its â oepost-humanâ fate. (shrink)

Luther.- Calvin.- Descartes.- Locke.- Newton.- Rousseau.- Kant.- Bentham.- Darwin.- Marx.- Freud.

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the Rights (...) of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

Background The concept of “health security” is often used to motivate public health responses, yet the ethical values that underpin this concept remain largely unexamined. The recent Australian responses to COVID-19 serve as an important case study by which we can analyse the pre-existing literature to see what ethical values shaped, and continue to shape, Australia’s response. Methods We conducted a critical interpretive literature review of academic and grey literatures within key databases, resulting in 2,220 sources. After screening for duplicates (...) and relevance, we analysed ninety-six sources. Results First, risk and uncertainty are a leading focus, with a heavy concentration on risks to life and health. Second, free movement, safety, and security were recurringly emphasized, albeit narrowly focused upon the safety of the population. Third, legitimacy was a recurring theme, and it is here that discussions of “health security” figured highly. Conclusion Discussions of harm from government and associated official bodies fail to adequately distinguish between various senses of harm. Moreover, while the literature often discusses the balancing of rights, the steps involved in the weighing of these rights is rarely adequately explained and defended. We suggest that decision-makers should endeavour to clearly identify and defend the values undergirding their decisions in the public sphere. (shrink)

At present, the science of consciousness is structured around the search for the neural correlates of consciousness. One of the alleged advantages of the NCCs framework is its metaphysical neutrality—the fact that it begs no contested questions with respect to debates about the fundamental nature of consciousness. Here, we argue that even if the NCC framework is metaphysically neutral, it is structurally committed, for it presupposes a certain model—what we call the Lite-Brite model—of consciousness. This, we argue, represents a serious (...) liability for the NCC framework for the plausibility of the Lite-Brite model is very much an open question, and the science of consciousness would be better served by a framework that does not presuppose it. Drawing on interventionist ideas in the philosophy of science, we suggest that the Difference-Maker framework can provide just such an alternative. Instead of searching for the neural correlates of consciousness, we ought to be searching for the difference makers of consciousness. We detail how a shift to searching DMCs will change both the practice of consciousness science and the interpretation of existing results. (shrink)

Chinese health authorities have not set up a very clear legal framework or ethical guideline on genetic research involving a huge number of human genetic samples. A nationwide mail survey was conducted to identify whether Chinese research communities identified the fundamental ethical issues. This paper provides in-depth analysis about the attitudes of target groups towards ownership, commercial conflict of interest, international cooperation and ethical review mechanism that may be used to inform national guidelines related to genetic databases in China.

Although DNA profiling has been an important forensic research technique since the late 1980s, for a long time, it had not captured much attention from either academics or the public so far.In recent years, this neglect seems to have ended. Not only has wide-spread media coverage of events such as 9/11 and the 2004 tsunami brought about widespread knowledge of the usefulness of forensic DNA identification, the development of large databases containing DNA profiles of both suspected and convicted criminals has (...) in the last few years also triggered a discussion on the intrusiveness of these measures into a number of civil rights.Indeed, although the increasing use of DNA based techniques in the criminal justice system promises to offer some great benefits for a society that is permeated with risk-aversion, at the same time it also gives rise to some worrying ethical and social consequences.In this article, we confine ourselves to an analysis of the practice of DNA sample retention by government agencies that use these samples to derive digital storable DNA profiles. While this practice seems unnecessary for the purpose of criminal investigation, it carries some severe risks for genetic privacy rights which have hardly been explored so far. (shrink)

Ethics is a philosophical branch of inquiry that reasons between what is right and wrong. The moral philosophy of Socrates, Aristotle, and Plato from ancient Greek became the basis of most of the western ethics. These days, ethics can be divided based on its inquiries for example, normative, descriptive, metaethics, and applied ethics or based on its theories like utilitarianism, emotivism, and universal ethics. In context with applied ethics that examines issues involving emerging technologies, this study will look into the (...) ethics of Malaysian stem cell technology based on written literature. It was mainly to identify Malaysian literature on stem cell ethics through conventional search since the mainstream international database indicated an obvious shortage. The critical review of this literature will facilitate in the understanding of unique position of Malaysia towards stem cell and its ethics in reference to the limited number. Despite the limitation, this can be a preliminary study urging for more inquiries and exploration to fulfil the multiple perspectives in ethics such as the diversity of Malaysian ethics, the impact of ethics in stem cell regulation in Malaysia, and if western contemporary ethics influences Malaysian ethics particularly involving stem cell technology. (shrink)

Based on the experiences of two high profile voluntary data collection programs for engineered nanomaterials, this article considers the merit of an international online registry for scientific data on engineered nanomaterials and environmental, health and safety (EHS) data. Drawing on the earlier experiences from the pharmaceutical industry, the article considers whether a registry of nanomaterials at the international level is practical or indeed desirable, and if so, whether such an initiative—based on the current state of play—should be voluntary or mandatory. (...) The article commences with an examination of the success and failures of voluntary reporting schemes in the UK and the US, as well as the International Council of Nanotechnology’s EHS Database and the OECD’s Working Party on Manufactured Nanomaterials. The article then examines the history of clinical trials registries, including the key motivations behind their creation, the role of self-regulation, and the perceived benefits thereof. Key lessons of the rise of clinical trials registration are highlighted, as are crucial considerations that must be addressed by policy makers should a multi-lateral public registry for data on nanoscale materials and EHS research be perceived to be a desirable option. The article concludes by arguing that while the creation of a registry to record information generated on nanomaterials is not straightforward, this reason alone should not deter industry from taking a proactive approach to the dissemination of fundamental data and research findings. (shrink)

Background: Research involving adults lacking mental capacity relies on the involvement of a proxy or surrogate, although this raises a number of ethical concerns. Empirical studies have examined attitudes towards proxy decision-making, proxies’ authority as decision-makers, decision accuracy, and other relevant factors. However, a comprehensive evidence-based account of proxy decision-making is lacking. This systematic review provides a synthesis of the empirical data reporting the ethical issues surrounding decisions made by research proxies, and the development of a conceptual framework of proxy (...) decision-making for research. Methods: A systematic review was conducted according to PRISMA guidelines. Databases including MEDLINE, EMBASE, and CINAHL were searched using a combination of search terms, and empirical data from eligible studies were retrieved. The review followed the framework synthesis approach to refine and develop a conceptual framework. Results: Thirty-four studies were included in the review. Two dimensions of proxy decision-making emerged. The ethical framing criteria of decision-making used by proxies: use of a substituted judgement, use of a best interests approach, combination of substituted judgement and best interests, and ‘something else’, and the active elements of proxy decision-making: ‘knowing the person’, patient-proxy relationship, accuracy of the decision, and balancing risks, benefits and burdens, and attitudes towards proxy decision-making. Interactions between the framing criteria and the elements of decision-making are complex and contextually-situated. Conclusions: The findings from this systematic review challenge the accepted reductionist account of proxy decision-making. Decision-making by research proxies is highly contextualized and multifactorial in nature. The choice of proxy and the relational features of decision-making play a fundamental role: both in providing the proxy’s authority as decision-maker, and guiding the decision-making process. The conceptual framework describes the relationship between the framing criteria used by the proxy, and the active elements of decision-making. Further work to develop, and empirically test the proposed framework is needed. (shrink)