scholarly journals Informed Consent in the Big Data Age: The Need for Normative Updates

2020 ◽  
Vol 20 (2) ◽  
pp. 115-131
Author(s):  
Ekaterina A. Koval ◽  
◽  
Marina D. Martynova ◽  
Natalya V. Zhadunova ◽  
◽  
...  
Keyword(s):  
Big Data ◽  
Informed Consent ◽  
The Novel ◽  
Use Of Data ◽  
Dynamic Consent ◽  
New Models ◽  
Complete Rejection ◽  
Catch 22 ◽  
The Individual ◽  
Meta Consent

Big data is changing the usual practices of obtaining informed consent. Traditional informed consent models stop working because they don’t take into account the speed, volume, and variety of collected and processed data. In the traditional model it is extremely difficult to identify all possible uses for the information received from users, and obtaining secondary consent is difficult or simply impossible in a situation where data is depersonalized. As a re­sult, a person signing an informed consent gets into the situation described by J. Heller in the novel «Catch-22»: absurd rules aimed at taking care of the individual lead to the op­posite results. To avoid falling into catch-22, it is necessary to create new models of in­formed consent (the model of broad (full) consent, the model of dynamic consent, the mar­ket model, the model of postponed consent, the model of meta consent, the model of multi-level consent, the democratic model of consent), which can more effectively protect per­sonal autonomy, confidentiality, privacy and serve as a guarantor of trust in the subjects of collecting, processing, and using big data. Although the new models of informed consent are not without drawbacks, a complete rejection of this procedure entails a violation of the pre­cautionary principle and increases the likelihood of harm to the data subject. At the same time, following the precautionary principle should take into account the relationship be­tween the individual and the General good and not hinder the development of different spheres of public life in the condition of big data accumulation. The creation of rules governing the receipt of informed consent and the use of data should be based on an analysis of existing practices and take into account a measure of openness and trust, which are determined by both personal and socio-cultural characteristics.

scholarly journals How should the ‘privilege’ in therapeutic privilege be conceived when considering the decision-making process for patients with borderline capacity?

2020 ◽  
Vol 47 (1) ◽  
pp. 47-50 ◽  
Author(s):  
Sumytra Menon ◽  
Vikki Entwistle ◽  
Alastair Vincent Campbell ◽  
Johannes J M van Delden
Keyword(s):  
Decision Making ◽  
Informed Consent ◽  
Well Being ◽  
Relevant Information ◽  
Mental Capacity ◽  
Decision Making Process ◽  
The Novel ◽  
The Individual ◽  
Therapeutic Privilege ◽  
Court Of Appeal

Therapeutic privilege (TP) is a defence that may be available to doctors who fail to disclose to the patient relevant information when seeking informed consent for treatment if they have a reasonable belief that providing that information would likely cause the patient concerned serious physical or mental harm. In a landmark judgement, the Singapore Court of Appeal introduced a novel interpretation of TP, identifying circumstances in which it might be used with patients who did not strictly lack capacity but might be inclined to refuse recommended treatments. In this paper, we explore the conceptual and practical challenges of this novel interpretation of TP. We propose that more emphasis should be placed on forms of shared and supported decision-making that foster the autonomy of patients with compromised mental capacity while being mindful of the need to safeguard their well-being. The kind of privilege that doctors might need to invoke is one of time and supportive expertise to ensure a flexible, responsive approach calibrated to the individual patients’ needs. The provision of such service would extinguish the need for the novel TP proposed by the Singapore Court of Appeal.

Margaret Mahy: An Adlerian Reading

2008 ◽  
Vol 1 (2) ◽  
pp. 187-199
Author(s):  
KATHRYN WALLS
Keyword(s):  
Young Female ◽  
The Other ◽  
Individual Psychology ◽  
The Novel ◽  
Alfred Adler ◽  
Female Protagonists ◽  
Magical Power ◽  
Margaret Mahy ◽  
The Individual

According to the ‘Individual Psychology’ of Alfred Adler (1870–1937), Freud's contemporary and rival, everyone seeks superiority. But only those who can adapt their aspirations to meet the needs of others find fulfilment. Children who are rejected or pampered are so desperate for superiority that they fail to develop social feeling, and endanger themselves and society. This article argues that Mahy's realistic novels invite Adlerian interpretation. It examines the character of Hero, the elective mute who is the narrator-protagonist of The Other Side of Silence (1995) , in terms of her experience of rejection. The novel as a whole, it is suggested, stresses the destructiveness of the neurotically driven quest for superiority. Turning to Mahy's supernatural romances, the article considers novels that might seem to resist the Adlerian template. Focusing, in particular, on the young female protagonists of The Haunting (1982) and The Changeover (1984), it points to the ways in which their magical power is utilised for the sake of others. It concludes with the suggestion that the triumph of Mahy's protagonists lies not so much in their generally celebrated ‘empowerment’, as in their transcendence of the goal of superiority for its own sake.

The Free Responsible Action of the Individual

2018 ◽  
Author(s):  
Michael P. DeJonge
Keyword(s):  
The Novel ◽  
Extreme Situation ◽  
The Third ◽  
Third Phase ◽  
Responsible Action ◽  
Action Type ◽  
Two Phases ◽  
The Individual ◽  
The Church

If, as Chapter 12 argues, much of Bonhoeffer’s resistance thinking remains stable even as he undertakes the novel conspiratorial resistance, what is new in his resistance thinking in the third phase? What receives new theological elaboration is the resistance activity of the individual, which in the first two phases was overshadowed by the resistance role played by the church. Indeed, as this chapter shows, Bonhoeffer’s conspiratorial activity is associated with what he calls free responsible action (type 6), and this is the action of the individual, not the church, in the exercise of vocation. As such, the conspiratorial activity is most closely related to the previously developed type 1 resistance, which includes individual vocational action in response to state injustice. But the conspiratorial activity differs from type 1 resistance as individual vocational action in the extreme situation.

Citizens, Elites, and Social Media Methodological Challenges and Opportunities in the Study of Persuasion and Mobilization

2019 ◽  
pp. 1036-1058
Author(s):  
Philip Habel ◽  
Yannis Theocharis
Keyword(s):  
Social Media ◽  
Big Data ◽  
Supply And Demand ◽  
Political Process ◽  
The Political ◽  
The Novel ◽  
Complete Understanding ◽  
Social Media Data ◽  
Challenges And Opportunities ◽  
Media Data

In the last decade, big data, and social media in particular, have seen increased popularity among citizens, organizations, politicians, and other elites—which in turn has created new and promising avenues for scholars studying long-standing questions of communication flows and influence. Studies of social media play a prominent role in our evolving understanding of the supply and demand sides of the political process, including the novel strategies adopted by elites to persuade and mobilize publics, as well as the ways in which citizens react, interact with elites and others, and utilize platforms to persuade audiences. While recognizing some challenges, this chapter speaks to the myriad of opportunities that social media data afford for evaluating questions of mobilization and persuasion, ultimately bringing us closer to a more complete understanding Lasswell’s (1948) famous maxim: “who, says what, in which channel, to whom, [and] with what effect.”

scholarly journals 4.C. Round table: Joining forces: frameworks for international and multi-sectoral collaborations in health information

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
◽  
Keyword(s):  
Public Health ◽  
Big Data ◽  
Health Information ◽  
Population Health ◽  
Round Table ◽  
Secondary Use ◽  
Use Of Data ◽  
National Initiatives ◽  
Information Research

Abstract Countries have a wide range of lifestyles, environmental exposures and different health(care) systems providing a large natural experiment to be investigated. Through pan-European comparative studies, underlying determinants of population health can be explored and provide rich new insights into the dynamics of population health and care such as the safety, quality, effectiveness and costs of interventions. Additionally, in the big data era, secondary use of data has become one of the major cornerstones of digital transformation for health systems improvement. Several countries are reviewing governance models and regulatory framework for data reuse. Precision medicine and public health intelligence share the same population-based approach, as such, aligning secondary use of data initiatives will increase cost-efficiency of the data conversion value chain by ensuring that different stakeholders needs are accounted for since the beginning. At EU level, the European Commission has been raising awareness of the need to create adequate data ecosystems for innovative use of big data for health, specially ensuring responsible development and deployment of data science and artificial intelligence technologies in the medical and public health sectors. To this end, the Joint Action on Health Information (InfAct) is setting up the Distributed Infrastructure on Population Health (DIPoH). DIPoH provides a framework for international and multi-sectoral collaborations in health information. More specifically, DIPoH facilitates the sharing of research methods, data and results through participation of countries and already existing research networks. DIPoH's efforts include harmonization and interoperability, strengthening of the research capacity in MSs and providing European and worldwide perspectives to national data. In order to be embedded in the health information landscape, DIPoH aims to interact with existing (inter)national initiatives to identify common interfaces, to avoid duplication of the work and establish a sustainable long-term health information research infrastructure. In this workshop, InfAct lays down DIPoH's core elements in coherence with national and European initiatives and actors i.e. To-Reach, eHAction, the French Health Data Hub and ECHO. Pitch presentations on DIPoH and its national nodes will set the scene. In the format of a round table, possible collaborations with existing initiatives at (inter)national level will be debated with the audience. Synergies will be sought, reflections on community needs will be made and expectations on services will be discussed. The workshop will increase the knowledge of delegates around the latest health information infrastructure and initiatives that strive for better public health and health systems in countries. The workshop also serves as a capacity building activity to promote cooperation between initiatives and actors in the field. Key messages DIPoH an infrastructure aiming to interact with existing (inter)national initiatives to identify common interfaces, avoid duplication and enable a long-term health information research infrastructure. National nodes can improve coordination, communication and cooperation between health information stakeholders in a country, potentially reducing overlap and duplication of research and field-work.

ExpanDrogram: Dynamic Visualization of Big Data Segmentation over Time

2021 ◽  
Vol 13 (2) ◽  
pp. 1-27
Author(s):  
A. Khalemsky ◽  
R. Gelbard
Keyword(s):  
Big Data ◽  
Visual Presentation ◽  
Trend Detection ◽  
Dynamic Visualization ◽  
Segmentation Process ◽  
Key Points ◽  
Wide Range ◽  
History Of ◽  
The Individual ◽  
Over Time

In dynamic and big data environments the visualization of a segmentation process over time often does not enable the user to simultaneously track entire pieces. The key points are sometimes incomparable, and the user is limited to a static visual presentation of a certain point. The proposed visualization concept, called ExpanDrogram, is designed to support dynamic classifiers that run in a big data environment subject to changes in data characteristics. It offers a wide range of features that seek to maximize the customization of a segmentation problem. The main goal of the ExpanDrogram visualization is to improve comprehensiveness by combining both the individual and segment levels, illustrating the dynamics of the segmentation process over time, providing “version control” that enables the user to observe the history of changes, and more. The method is illustrated using different datasets, with which we demonstrate multiple segmentation parameters, as well as multiple display layers, to highlight points such as new trend detection, outlier detection, tracking changes in original segments, and zoom in/out for more/less detail. The datasets vary in size from a small one to one of more than 12 million records.

PRAGMATIC POTENTIAL OF AUTHOR’S AND TRANSFORMED PHRASEOLOGIES IN THE WORK OF CARLOS RUIZ ZAFÓN «THE PRISONER OF HEAVEN»

2021 ◽  
pp. 18-28
Author(s):  
A. Yu. Bovsunivska A. Yu.
Keyword(s):  
Emotional State ◽  
Spanish Language ◽  
The Novel ◽  
Unique Combination ◽  
Textual Space ◽  
Different Types ◽  
General Linguistic ◽  
The Individual ◽  
Pragmatic Aspects ◽  
Individual Style

The article is devoted to the study of pragmatic aspects of the use of phraseology in the textual space of Carlos Ruiz Safón’s novel «Prisoner of Heaven». One of the defining features of the individual style of this well-known modern Spanish writer is the metaphoricity and figuration of aristic expression, the saturation of the text with phraseological units that play a significant role in creating a pragmatic charge of the work of art. Along with general linguistic phraseological units, which include commonly-used vocabulary, the author uses dialectal and authorial phraseological units, which is a feature of his individual style. All three designated groups of phraseological units mostly reflect the negative psychophysical and emotional state of the characters. The author uses dialectal, individually-authorial and modified phraseological units, which is a feature of his individual style. It is determined that transformation is one of the most productive and most effective ways to update linguistic means in works of art. Author’s modification of FU leads to a change in the semantics and structure of expression, gives it a more expressive or emotional coloring. Transformed phraseology is limited to individual usage and is subject to the context of the work. Modified FUs in the Zafón’s artistic space acquire certain aesthetic and artistic qualities. Their modification is mainly to create the desired stylistic effect – to achieve emotional or expressive expression, which increases the reader’s interest, focuses on the content, issues of the work, as well as reveals the potential expressive potential of the Spanish language. In the transformed FUs, not just a new meaning is traced, but a combination of the well-known and the occasional. The unique combination of different types of phraseological units in the novel is considered a manifestation of individual style and makes a representation of the individually-authorial linguistic picture of the world more expressive.

Interventions Promoting Educators’ Use of Data: Research Insights and Gaps

2012 ◽  
Vol 114 (11) ◽  
pp. 1-48 ◽  
Author(s):  
Julie A. Marsh
Keyword(s):  
Data Collection ◽  
Research Question ◽  
Time Frame ◽  
System Level ◽  
Quality Of Data ◽  
Leverage Points ◽  
Knowledge To Action ◽  
Use Of Data ◽  
The Individual ◽  
Capacity Data

Background/Context In recent years, states, districts, schools, and external partners have recognized the need to proactively foster the use of data to guide educational decision-making and practice. Understanding that data alone will not guarantee use, individuals at all levels have invested in interventions to support better access to, interpretation of, and responses to data of all kinds. Despite the emergence of these efforts, there has been little systematic examination of research on such efforts. Purpose/Objective/Research Question/Focus of Study This article synthesizes what we currently know about interventions to support educators’ use of data—ranging from comprehensive, system-level initiatives, such as reforms sponsored by districts or intermediary organizations, to more narrowly focused interventions, such as a workshop. The article summarizes what is what is known across studies about the design and implementation of these interventions, their effects at the individual and organizational levels, and the conditions shown to affect implementation and outcomes. Research Design Literature review. Data Collection and Analysis This review entailed systematic searches of electronic databases and careful sorting to yield a total of 41 books, peer-reviewed journal articles, and reports. Summaries of each publication were coded to identify the study methods (design, framework, sample, time frame, data collection), intervention design (level of schooling, focal data and data user, leverage points, components), and findings on implementation, effects, and conditions. Findings/Results The review uncovers a host of common themes regarding implementation, including promising practices (e.g., making data “usable” and “safe,” targeting multiple leverage points) and persistent challenges (e.g., developing support that is generic but also customized, sustaining sufficient support). The review also finds mixed findings and levels of research evidence on effects of interventions, with relatively more evidence on effects on educators’ knowledge, skills, and practice than on effects on organizations and student achievement. The article also identifies a set of common conditions found to influence intervention implementation and effects, including intervention characteristics (capacity, data properties), broader context (leadership, organizational structure), and individual relationships and characteristics (trust, beliefs and knowledge). Conclusions/Recommendations The review finds that the current research base is limited in quantity and quality. It suggests the need for more methodologically rigorous research and greater attention to the organizational and student-level outcomes of interventions, comparative analyses, interventions that help educators move from knowledge to action, and specific ways in which the quality of data and leadership practices shape the effectiveness of interventions.

The Datafied Society

2017 ◽  
Keyword(s):  
Big Data ◽  
Everyday Life ◽  
The Novel ◽  
Research Practices ◽  
Knowledge And Skills ◽  
Its Analysis ◽  
New Knowledge ◽  
Novel Methods ◽  
Way Of Thinking ◽  
Machine Readable

As machine-readable data comes to play an increasingly important role in everyday life, researchers find themselves with rich resources for studying society. The novel methods and tools needed to work with such data require not only new knowledge and skills, but also a new way of thinking about best research practices. This book critically reflects on the role and usefulness of big data, challenging overly optimistic expectations about what such information can reveal, introducing practices and methods for its analysis and visualisation, and raising important political and ethical questions regarding its collection, handling, and presentation.

THE INFLUENCE OF THE ARCHETYPE OF THE WAY ON THE FORMATION OF THE PERSONALITY IN THE NOVEL PAPER TOWNS BY JOHN GREEN

2021 ◽  
Vol 1 (97) ◽  
pp. 9-28
Author(s):  
Наталія Юріївна Бондар
Keyword(s):  
Skin Color ◽  
Growing Up ◽  
The Novel ◽  
Historical Method ◽  
Holistic Analysis ◽  
The Individual ◽  
Metaphorical Extension ◽  
Short Time ◽  
Good And Evil ◽  
The Way

The article deals with the influence of the archetype of the way on the formation of the personality in the novel Paper Towns by John Green. The purpose of this article is to determine the originality of the image of an American teenager and to identify the influence of the archetype of the way on the formation of the personality, as well as to consider the archetype of the way as a real path of the character in the novel Paper Towns by John Green, taking into account the individual author’s interpretation. This object of research has been chosen because through it one can comprehend the specifics of the psychology of a teenager and define the artistic features that distinguish the author’s stylistics and worldview. The comprehensive research methodology has been used in the work: the synthesis of the comparative historical method, holistic analysis, elements of mythopoetic and hermeneutic methods. In the novel Paper Towns by John Green mythopoetic consciousness presupposes ontological ambivalent intentions in the archetype of the child / teenager (good and evil children). The metaphorical extension of the archetype of the child / teenager has been revealed in this article. All the images of teenagers are given in the development, on the way to growing up. The originality of the archetype of the way here lies in the fact that it merges with the concepts of Space and Chaos, confirming the idea of the unity of mankind. The metaphors themselves are also peculiar, associated with the archetype of the way: inanimate strings, gradually turning into living blades of grass, intertwined with roots with all that exists. During the search for Margo, Quentin grows up significantly, becomes more tolerant to their friends, and he learns to take responsibility for him. The image of Margo is the image of a rebel against any lack of freedom that it is inevitable in the “golden cage”. It is also revealed how Quentin is influenced by the new world opened during his trips, and his personal environment: for example, Radar opens his eyes to the fact that he does not need to demand too much from others. Both Margo is changed (from a “paper” girl – to a real one) and Ben and Radar are changed (false interests go into the background; everyone learns to expose himself to risks and troubles for the sake of friendship and human salvation). Ben and Radar are also shown in the development, in a short time they learn to understand each other and distinguish false values from true ones. These changes occur with all the teenagers, regardless of their skin color and nationality, and such an interpretation of the insignificance of formal differences is also a new word of the author.

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