Biobanking in Europe has made major steps towards harmonization and shared standards for the collection and processing of data and samples stored in biobanks. Still, biobanks and researchers face substantial legal difficulties in the field of data protection and sample management. Data protection law was harmonized almost 15 years ago while rights in samples fall under the competence of the Member States of the EU. Despite the Data Protection Directive the field of data protection shows (...) a substantial degree of deviation as public health was excluded from the harmonization. Biobanks seem to have substantially fewer difficulties to cope with in terms of the legal requirements in the field of sample management. This paper discusses the legal framework, experiences of different biobanks in Europe and potential ways forward. It also highlights the need for a health economic analysis of the costs and benefits of privacy protection in Europe. At the moment, policymakers seem to build their decisions on an insufficient evidence base which underestimates the potential value of biobanks for European public health. Within the past few years little progress has been achieved with regards to the development of a unified legal framework in Europe, The diversity in the legal system is also reflected in the different approaches of ethics committees towards biobanking. To secure the responsible and effective use of data and samples, more efforts are needed to come up with pathways for a solution. (shrink)

There are many ways to assess face perception skills. In this study, we describe a novel task battery FEAST (Facial Expression Action Stimulus Test) developed to test recognition of identity and expressions of human faces as well as stimulus control categories. The FEAST consists of a neutral and emotional face memory task, a face and object identity matching task, a face and house part-to-whole matching task, and a human and animal facial expression matching task. The identity and part-to-whole matching tasks (...) contain both upright and inverted conditions. The results provide reference data of a healthy sample of controls in two age groups for future users of the FEAST. (shrink)

Personalised learning systems—systems that predict learning needs to tailor education to the unique learning needs of individual students—are gaining rapid popularity. Praise for educational technology is often focused on how technology will benefit school systems, but there is a lack of understanding of how it will affect the student and the learning process. By uncovering what the meaning of ‘personal’ is in educational philosophy and as embodied in the technology, we illustrate that these two understandings are different regarding the autonomy (...) of the student. Personalised learning technology, therefore, bears the risk of failing to achieve its educational ideal of what personalisation should be. We also illustrate how personalised learning technology effects student autonomy by requiring the intensive tracking of the learning process, exposing them to privacy and data protection risks. We do not claim that education does not need technology, but we want to illustrate the importance of values as drivers of innovation. (shrink)

The purpose of this article is to investigate how sex segregation, social class, and gender are analytically related to occupational stratification. Recent discussions of women and men in the labor force revolve around whether a sex-segregated model in which sex of the worker affects placement, a pure social class model using classical criteria, or a gendered social class model in which social organizational processes of a gendered social class structure affect positioning in the stratification system. This article addresses the influence (...) that social class and gender have on stratification in the labor market. Data from the 1972-82 General Social Survey on 371 occupations, representing 7,541 male and female workers, are used to formulate a social class scheme based on all workers' characteristics. In comparing the models, the analyses show that an integrated gendered social class perspective is consistent with the empirical differentiation found among women and men in the labor force. (shrink)

Biobanking in Europe has made major steps towards harmonization and shared standards for the collection and processing of data and samples stored in biobanks. Still, biobanks and researchers face substantial legal difficulties in the field of data protection and sample management. Data protection law was harmonized almost 15 years ago while rights in samples fall under the competence of the Member States of the EU. Despite the Data Protection Directive the field of data protection shows (...) a substantial degree of deviation as public health was excluded from the harmonization. Biobanks seem to have substantially fewer difficulties to cope with in terms of the legal requirements in the field of sample management. This paper discusses the legal framework, experiences of different biobanks in Europe and potential ways forward. It also highlights the need for a health economic analysis of the costs and benefits of privacy protection in Europe. At the moment, policymakers seem to build their decisions on an insufficient evidence base which underestimates the potential value of biobanks for European public health. Within the past few years little progress has been achieved with regards to the development of a unified legal framework in Europe, The diversity in the legal system is also reflected in the different approaches of ethics committees towards biobanking. To secure the responsible and effective use of data and samples, more efforts are needed to come up with pathways for a solution. (shrink)

Using panel data from three Canadian provinces, this article examines the relationship between the de-marketing of tobacco products through provincial-level price increases and consumers’ attempts to quit smoking as measured by the uptake of tobacco replacement therapies. We ground our hypotheses in the rational addiction model and the theory of planned behavior. Our analyses suggest a positive, one-month lagged effect of a price increase of tobacco products on the uptake of tobacco replacement therapies. This effect dissipates 3 months later, (...) suggesting that there is a critical period for aggressive de-marketing of tobacco products. We discuss the implications of these results for theory and future research into de-marketing harmful consumer products. (shrink)

This book contains programmatic essays that focus on broad-ranging proposals for re-envisioning a discipline of comparative philosophy of religions. It also contains a number of case studies focussing on the interpretation of particular religio-historical data from comparatively oriented philosophical perspectives.

The aim of this study was to test whether an online video game can be used to investigate planning ability and whether fluid intelligence, objective numeracy, and subjective numeracy are predictive of game performance. Our results demonstrate that fluid intelligence is particularly important, which is in line with previous non-game-based studies that show a relationship between classical planning tests and fluid intelligence. Video games have been previously used for research into cognitive processes and taking them online facilitates data collection (...) on a larger scale. Online video games also afford data collection without the expense and stress of a laboratory environment. For these reasons, using online video games to investigate human cognition is a promising alternative to the classic cognitive paradigms used in laboratories. (shrink)

Is behavioral integration (i.e., which occurs when a subjects assertion that p matches her non-verbal behavior) a necessary feature of belief in folk psychology? Our data from nearly 6,000 people across twenty-six samples, spanning twenty-two countries suggests that it is not. Given the surprising cross-cultural robustness of our findings, we suggest that the types of evidence for the ascription of a belief are, at least in some circumstances, lexicographically ordered: assertions are first taken into account, and when an agent (...) sincerely asserts that p, non-linguistic behavioral evidence is disregarded. In light of this, we take ourselves to have discovered a universal principle governing the ascription of beliefs in folk psychology. (shrink)

Research on electroencephalogram (EEG) characteristics associated with major depressive disorder (MDD) has accumulated diverse neurophysiologic findings related to the content, topography, neurochemistry, and functions of EEG oscillations. Significant progress has been made since the first landmark EEG study on affective disorders by Davidson 35 years ago. A systematic account of these data is important and necessary for building a consistent neuropsychophysiologic model of MDD and other affective disorders. Given the extensive data on frequency-dependent functional significance of EEG oscillations, (...) a frequency domain approach may reveal the types of brain functions involved and disturbed in MDD. In this review, we systematize and integrate diverse and often unconnected observations on the content, topography, neurochemistry, and functions of EEG oscillations involved in MDD within the general concept of an EEG oscillatory pattern. (shrink)

Is behavioral integration a necessary feature of belief in folk psychology? Our data from over 5,000 people across 26 samples, spanning 22 countries suggests that it is not. Given the surprising cross-cultural robustness of our findings, we argue that the types of evidence for the ascription of a belief are, at least in some circumstances, lexicographically ordered: assertions are first taken into account, and when an agent sincerely asserts that p, nonlinguistic behavioral evidence is disregarded. In light of this, (...) we take ourselves to have discovered a universal principle governing the ascription of beliefs in folk psychology. (shrink)

This article has two aims. The first is to introduce some novel data that highlight rather surprising pragmatic abilities in autism spectrum disorder (ASD). The second is to consider a possible implication of these data for an emerging empirical methodology in philosophy of language and mind. In pursuing the first aim, we expect our main audience to be clinicians and linguists interested in pragmatics. It is when we turn to methodological issues that we hope to pique the interest (...) of philosophers. Still, the methodological issue becomes pressing precisely because of the empirical finding—thus the first part is important for the philosophical readers as well. The game plan is as follows. Given our intended dual audience, we begin with background on autism and pragmatics. Some of this material will be familiar to some of our readership, but few will know all of it. (Those who do are invited to skip these sections.) We then present some results from our pilot study on a corpus of speech by people with ASD. The heart of our finding is that certain speakers with ASD, who have severe trouble with familiar pragmatic phenomena such as metaphor and conversational implicature, exhibit surprising abilities with respect to what is often called “pragmatic determinants of what is said.” We turn next to a possible implication of this finding: It seems to suggest that hitherto seemingly promising evidence from ASD about the semantics/pragmatics boundary is.. (shrink)

Drawing on Moreno's cognitive-affective theory of learning with media, this research aims to investigate the effectiveness of different multimedia glosses on learners' vocabulary acquisition and reading comprehension in a CALL environment. A total of 160 university students who learnt English as a foreign language in four classes participated in the study and were exposed to one of the four conditions: L2 definition only, L2 definition coupled with audio, L2 definition plus video, and L2 definition with picture. Participants were asked to (...) read eight hypermediated reading texts. Reading comprehension as well as vocabulary acquisition were measured using a pretest–posttest design. The results show first that all these four conditions led to students' vocabulary gains. More specifically, participants who had access to L2 definition plus picture and plus videos achieved significantly higher scores than the other two groups, L2 definition coupled with audio and L2 definition only. Concerning reading comprehension, all multimedia glossing presentation led to better reading comprehension, but no differences were found among all the glossing groups. The questionnaire and interview data indicate that students preferred L2 definition coupled with video and picture glosses, followed by audio and L2 definition only. The results reflect that multimedia glossing presentation creates a different effect on students' vocabulary acquisition and reading comprehension, respectively. They also provide pedagogical implications for learning in times of COVID-19. (shrink)

Frank Mitjans is an architect who has worked in London since 1976. He was introduced to the significance of the figure of St. Thomas More by Andrés Vázquez de Prada, author of the biography, Sir Tomás Moro, Lord Canciller de Inglaterra. In 1977 Vázquez de Prada invited Mitjans to visit with him the Thomas More Exhibition at the National Portrait Gallery, which stimulated his interest in representations of More, his family and his friends. Since August 2002 he has given many (...) presentations and talks on the topography of More’s London to groups of students and other interested people in Britain, Ireland, and Sweden. Frank Mitjans, architecte qui travaille à Londres depuis 1976, fut initié au personnage de Saint Thomas More par Andrés Vázquez de Prada, auteur de la biographie Sir Tomás Moro, Lord Canciller de Inglaterra. En 1977 Vázquez de Prada l’invita à l’accompagner dans sa visite de l’exposition Thomas More à la National Portrait Gallery, évènement qui aiguisa son intérêt pour les représentations de More, de sa famille et de ses amis. Depuis août 2002 il a régulièrement fait des présentations et des exposés à des groupes d’étudiants et d’autres en Grande-Bretagne, Irlande et Suède au sujet de la topographie du Londres de Thomas More. The recent exhibitions of the works of Holbein in London and Basel, and scholarly publications such as Holbein and England, have rekindled interest in the Portrait of Thomas More and his Family, and in the late sixteenth-century versions of Holbein’s presumed lost original. The present paper analyses the differences between the sixteenth-century versions and Holbein’s 1527 composition sketch, and concludes that the sketch is a more reliable witness to Holbein’s lost painting than the later versions, as well as the only authentic witness to More’s intentions; though anything we learn from the drawing must be checked against what we know from More’s letters and writings and other biographical data. From the later versions, however, and in particular from the references to Seneca on them, we can learn about those who commissioned them and England’s peculiar historical circumstances. (shrink)

The article summarizes the theoretical and methodological knowledge about ecotourism as one of the viable types of tourism in the postmodern era, clarifies the patterns of its formation and development, a variety of approaches to its interpretation, interaction with other types of tourism, features of motivation and management in ecotourism. On the basis of the generalized data a number of perspective educational conditions is modeled: the orientation of the maintenance of pedagogical education on formation of steady positive motivation; updating (...) the content of professional training; availability of educational and methodical support; interrelation of competence, system and personal-activity approaches. Diagnostic methods relevant for postmodern education are selected: methods of diagnosing students' learning motivation; methods of diagnosis of value orientations in career; tests to determine the levels of formation of the components of professional competence. It is proved that the professional training of teachers who are able to use ecological tourism in their professional activities at a high level is one of the important conditions for increasing the interest of children and young people in physical education, tourism and sports, ensuring the necessary physical activity, developing, maintaining and strengthening their health, adaptation to the flexible postmodern society. (shrink)

This research examines the influence of social status, gender and family structure on parental values. Data are taken from the General Social Survey of six years in which parental value questions in standard form appeared. Logistic regression models are estimated for seven values representing three types of parental values: conformity, gender roles and self-direction. Results indicate that while social status has a positive effect on the preference of self-direction values and a negative effect on the valuation of conformity and (...) traditional gender roles, gender and family structure are also consistently related to characteristics parents consider important for children. Compared to men, women are more likely to endorse self-direction and less likely to value conformity and traditional gender roles in children. Women in single-parent families are also more likely than women in two-parent families to value conformity and gender roles. Discussions of the findings and directions for future research are provided. (shrink)

This study aimed to evaluate if eye blinks can be used to discriminate players with different performance in a session of Nintendo Entertainment System (NES) Tetris. To that end, we developed a state-of-the-art method for blink extraction from EAR measures, which is robust enough to be used with data collected by a low-grade webcam such as the ones widely available on laptop computers. Our results show a significant decrease in blink rate per minute (blinks/m) during the first minute of (...) playing Tetris. After having defined 3 groups of proficiency based on in-game performance (Novices, Intermediates, and Experts) we found out that expert players display a significantly lower decrease in blinks/m compared to novices during the first minute of gameplay, which shows that Tetris players' proficiency can be detected by looking at eye blinks/m variations during the early phase of a game session. This difference in blinks/m is observed throughout the entire game session, which supports the general conclusion that proficient Tetris players have a lower decrease in blinks/m, even when playing more difficult levels. Finally, we offer some interpretations of this effect and the relationship that our results may have with the visual cognitive workload experienced during the gameplay. (shrink)

The notion of representation in neuroscience has largely been predicated on localizing the components of computational processes that explain cognitive function. On this view, which I call “algorithmic homuncularism,” individual, spatially and temporally distinct parts of the brain serve as vehicles for distinct contents, and the causal relationships between them implement the transformations specified by an algorithm. This view has a widespread influence in philosophy and cognitive neuroscience, and has recently been ably articulated and defended by Shea. Still, I am (...) skeptical about algorithmic homuncularism, and I argue against it by focusing on recent methods for complex data analysis in systems neuroscience. I claim that analyses such as principle components analysis and linear discriminant analysis prevent individuating vehicles as algorithmic homuncularism recommends. Rather, each individual part contributes to a global state space, trajectories of which vary with important task parameters. I argue that, while homuncularism is false, this view still supports a kind of “vehicle realism,” and I apply this view to debates about the explanatory role of representation. (shrink)

The purpose of this study was to identify how older Korean people seek information and their desire to participate in decision making about their health care. A total of 165 elderly people living in Seoul, South Korea, participated in the study. Data were collected during individual interviews using the Autonomy Preference Index. The mean information-seeking score was high. The mean score for their desire to participate with a physician in decision making was lower, but this was higher when family (...) members were involved. The study indicates that many older people want to receive information about their health care. Families (or guardians), as well as older people themselves, should be included in the decision-making process. Nurses can encourage older people to express their wishes, while treating each individual with respect. (shrink)

ABSTRACT In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist (...) of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating (...) to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner. (shrink)

This article has two main goals: to examine and classify the ways data can be used to advance normative theorizing in political theory, and to demonstrate such usages in the contested disciplinary field of religion–state relations and specifically regarding the hotly debated model of the separation of religion and state. Regarding the former, it is suggested here that the general observation that evaluation of political institutions must rely on proper understanding of such institutions and hence be data-sensitive, can (...) be further detailed or classified, via the following categories: conversion, institutional clarity, theoretical clarity and finally, theory improvement. With regard to the latter we examine how data regarding religion–state relations enables a better understanding (via the noted novel classifications or categories) of two important debates: ‘delineation’ (i.e. the argument that pure separation of religion and state does not exist) and ‘separation-establishment’ (i.e. arguing that models other than separation are permissible in religion–state relations). (shrink)

This article has two main goals: to examine and classify the ways data can be used to advance normative theorizing in political theory, and to demonstrate such usages in the contested disciplinary field of religion–state relations and specifically regarding the hotly debated model of the separation of religion and state. Regarding the former, it is suggested here that the general observation that evaluation of political institutions must rely on proper understanding of such institutions and hence be data-sensitive, can (...) be further detailed or classified, via the following categories: conversion, institutional clarity, theoretical clarity and finally, theory improvement. With regard to the latter we examine how data regarding religion–state relations enables a better understanding (via the noted novel classifications or categories) of two important debates: ‘delineation’ (i.e. the argument that pure separation of religion and state does not exist) and ‘separation-establishment’ (i.e. arguing that models other than separation are permissible in religion–state relations). (shrink)

ABSTRACT Data from digital technologies are increasingly integrated in public health research. In April of 2020, we interviewed a subset of participants who completed a survey approximately one month earlier. Using the survey, we contacted and interviewed participants who had expressed their willingness or unwillingness to share digital data for use in public health. We followed a directed content analysis approach for the analysis of the interview data. Among participants who had reported being unwilling to share (...) class='Hi'>data, concerns about privacy, confidentiality, and the purpose of the research were cited. During the interviews, 76.9% of the participants who had who had previously indicated that they were unwilling to share their data, expressed willingness to share data in order to assist with COVID-19 prevention. Our results contribute to our understanding of people’s perspectives on sharing personal data and of the way their perspectives can vary as a function of potential uses of their personal information. (shrink)

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of (...) the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions?In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached. (shrink)

Research integrity is core to the mission of higher education. In undergraduate student samples, self-reported rates of data fabrication have been troublingly high. Despite this, no research has investigated undergraduate data fabrication in a more systematic manner. We applied duplication screening techniques to 18 data sets submitted by psychology honors students for assessment. Although we did not identify any completely duplicated cases, there were numerous partial duplicates. Rather than indicating fabrication, however, these partial duplicates are likely a (...) consequence of poor measure selection, insufficient data screening, and/or participant characteristics. Implications for the teaching and supervision of honors students are discussed. (shrink)

Reactivity in qualitative data collection occurs when a researcher generates data about a situation with reactivity, that is, a situation in which the ongoing research affects the research participants such that they, say, diverge from their routines when the researcher is present, or tell the researcher what they think she wants to hear. In qualitative research, there are two basic approaches to reactivity. The traditional position maintains that data should ideally be collected in situations without any reactivity. (...) In other words, good data are reactivity free. By contrast, the more recent view holds that data from situations with reactivity are fine as long as the researcher is aware of the occurring reactivity so that she can take it into account when interpreting her data. In this fashion, good data are reactivity transparent. In this paper, I first spell out and defend the more recent approach to reactivity. I argue that qualitative data are reactivity transparent when conjoined with true reactivity assumptions and that, thus supplemented, data are informative about social life independently of its being studied. Next, I examine various issues raised by the requirement to put forth true reactivity assumptions. Lastly, I use my discussion of reactivity transparency as a basis for providing a framework for thinking about good qualitative data. (shrink)

The Protein Ontology provides terms for and supports annotation of species-specific protein complexes in an ontology framework that relates them both to their components and to species-independent families of complexes. Comprehensive curation of experimentally known forms and annotations thereof is expected to expose discrepancies, differences, and gaps in our knowledge. We have annotated the early events of innate immune signaling mediated by Toll-Like Receptor 3 and 4 complexes in human, mouse, and chicken. The resulting ontology and annotation data set (...) has allowed us to identify species-specific gaps in experimental data and possible functional differences between species, and to employ inferred structural and functional relationships to suggest plausible resolutions of these discrepancies and gaps. (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the contribution of (...) wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

Engineering sketches and drawings are the building blocks of technological design and production. These visual representations act as the means for organizing the design to production process, hence serving as a "social glue" both between individuals and between groups. The author discusses two main capacities such visual representations serve in facilitating distributed cognition in team design work As conscription devices, they enlist and organize group participation. As boundary objects, they facilitate the reading of alternative meanings by various groups involved in (...) the design process. The introduction of computer-aided design into this visual culture of engineering restructures relationships between workers in ways that can hamper the flexibility necessary for these crucial capacities to take place. The data are drawn from a study of the daily practices of engineers engaged in redesigning a turbine engine package. The method is participant observation. (shrink)

Recently, it has been argued that the use of Big Data transforms the sciences, making data-driven research possible and studying causality redundant. In this paper, I focus on the claim on causal knowledge by examining the Big Data project EXPOsOMICS, whose research is funded by the European Commission and considered capable of improving our understanding of the relation between exposure and disease. While EXPOsOMICS may seem the perfect exemplification of the data-driven view, I show how causal (...) knowledge is necessary for the project, both as a source for handling complexity and as an output for meeting the project’s goals. Consequently, I argue that data-driven claims about causality are fundamentally flawed and causal knowledge should be considered a necessary aspect of Big Data science. In addition, I present the consequences of this result on other data-driven claims, concerning the role of theoretical considerations. I argue that the importance of causal knowledge and other kinds of theoretical engagement in EXPOsOMICS undermine theory-free accounts and suggest alternative ways of framing science based on Big Data. (shrink)

Research Ethics, Volume 18, Issue 1, Page 24-38, January 2022. Are social science, cross-border research projects, where recruitment and data collection are carried out remotely, required to follow similar ethical and data-sharing procedures as ‘on-the-ground’ studies that use traditional means of recruitment and participant engagement? This article reflects on our experience of dealing with this question when we had to switch to online data collection due to the restrictions posed by the COVID-19 pandemic, such as the inability (...) to travel or work in person with local communities and collaborators. Using social media platforms and online data collection when conducting research brings many advantages, such as being able to communicate remotely but directly with gatekeepers and collaborators, and in reaching potential participants on a global scale. However, neither the guidelines and advice for conducting ethically sound internet-based research, nor the academic literature focussed on building equitable research partnerships between the Global North and the Global South, offer much information regarding the ethical concerns, or address the grey areas, posed by this type of digital and distanced transnational research. In our experience, conducting research remotely made negotiations of access very challenging due to the politics of positionality between Global North and South researchers, lack of clarity on ethical processes and perceptions of gatekeepers who we could not meet in person. We hope the reflections on, and discussion of, our experience encourage deliberation on the present ethical challenges posed by online and social-media-disseminated data collection, particularly in cross-border circumstances. (shrink)

Most people are completely oblivious to the danger that their medical data undergoes as soon as it goes out into the burgeoning world of big data. Medical data is financially valuable, and your sensitive data may be shared or sold by doctors, hospitals, clinical laboratories, and pharmacies—without your knowledge or consent. Medical data can also be found in your browsing history, the smartphone applications you use, data from wearables, your shopping list, and more. At (...) best, data about your health might end up in the hands of researchers on whose good will we depend to avoid abuses of power.2 Most likely, it will end up with data brokers who might sell it to a future employer, or an insurance company, or the government. At worst, your medical data may end up in the hands of criminals eager to commit extortion or identity theft. In addition to data harms related to exposure and discrimination, the collection of sensitive data by powerful corporations risks the creation of data monopolies that can dominate and condition access to health care. -/- This chapter aims to explore the challenge that big data brings to medical privacy. Section I offers a brief overview of the role of privacy in medical settings. I define privacy as having one’s personal information and one’s personal sensorial space (what I call autotopos) unaccessed. Section II discusses how the challenge of big data differs from other risks to medical privacy. Section III is about what can be done to minimise those risks. I argue that the most effective way of protecting people from suffering unfair medical consequences is by having a public universal healthcare system in which coverage is not influenced by personal data (e.g., genetic predisposition, exercise habits, eating habits, etc.). (shrink)

Biodiversity scientists often describe their field as aiming to save life and humanity, but the field has yet to reckon with the history and contemporary practices of colonialism and systematic racism inherited from natural history. The online data portals scientists use to store and share biodiversity data are a growing class of organizations whose governance can address or perpetuate and further institutionalize the implicit assumptions and inequitable social impacts from this extensive history. In this context, researchers and Indigenous (...) Peoples are developing and implementing new strategies to examine and change assumptions about which agents should count as salient participants to scientific projects, especially projects that build and manage large digital data portals. Two notable efforts are the FAIR and CARE Principles for scientific data management and governance. To characterize how these influence the governance of biodiversity data portals, we develop an account of fitness-for-use that makes explicit its social as well as technical conditions in relation to agents and purposes. The FAIR Principles, already widely adopted by biodiversity data projects, prioritize machine agents and efficient computation, while the CARE Principles prioritize Indigenous Peoples and their data sovereignty. Both illustrate the potency of an emerging general strategy by which groups of actors craft and implement governance principles for data fitness-of-use to change assumptions about salient participants to data science. (shrink)

This article focuses on emotions, conceptualised as emotional labour, evoked during data practices used to repurpose and enable healthcare data journeys for Finnish public healthcare. Combined approaches from critical data studies and the sociology of emotions were used to contribute to a better understanding of the mundane but often invisible work of the emotions of experts involved in data practices, such as facilitating data journeys and building data technologies. The article is based on a (...) two-and-a-half-year ethnographic study conducted in a Finnish regional public healthcare and social service organisation. The study results were derived from the analysis of 39 interviews and fieldnotes produced by observing 170 h of various meetings, events and work activities performed by experts. The results were organised into three forms of observed experts’ emotional labour related to three phases of healthcare data journeys: caring for data production and preparing data for travel, managing excitement and frustration in data processing for continually building the data management system, and reassuring users in making sense of obtained data analytics. The results contribute to a greater understanding of the emotions and emotional labour generated by healthcare data journeys and in relation to the volatile nature of healthcare data and the collaborative character of data practices. This work advocates for a better recognition of the emotional aspects of data practices and their implications on data-based knowledge and datafication processes in healthcare. (shrink)

This article considers how Spatial Big Data is situated and produced through embodied spatial experiences as data processes appear and act in small moments on mobile phone applications and other digital spatial technologies. Locating Spatial Big Data in the historical and geographical contexts of Sydney and Hong Kong, it traces how situated knowledges mediate and moderate the rising potency of discourses of cartographic reason and data logics as colonial cartographic imaginations expressed in land divisions and urban (...) planning continue on, in a world that increasingly values models of calculability, interoperability and authority. It draws on ethnographic material gathered through walking interviews in both cities, and in doing so, it argues that by using ethnographic ‘moments’, it is possible to decentre the focus on data processes to consider the critical potential of a politics of everyday experiences that produce and reflect the structures of data logics. Through these ethnographic moments, this article examines how mobile technologies are complicit in the production of Spatial Big Data, and the impact this has on the increasing regimentation and surveillance of modes of being and expression via mobile media. At the same time, it will argue that while spatial calculability has expanded from cartographic reason into data logics, the epistemological universality of Spatial Big Data is constantly being resisted – in moments of experimentation, failure, intuition, memory and desire, the ghosts of the incalculable epistemes, experiences and people, forgotten by the emphasis on calculation, continue to speak. (shrink)

In May 2021, the UK National Health Service (NHS) proposed a scheme—called General Practice Data for Planning Research (GPDPR)—for sharing patients’ data. Under that system, a patient who does not wish to participate must actively opt out of their data being shared with third parties for research and other purposes. In this paper, we analyse the lessons that can be learned for the responsible and ethical governance of health data from the NHS’ new scheme. More specifically, (...) we explore the extent to which the opt-out within the planned scheme complies with the requirements stemming from the General Data Protection Regulation (GDPR), particularly in relation to the principles of lawfulness and transparency. We then evaluate, from an ethical perspective, this opt-out ‘nudge’ and whether it is sufficiently resistible, reversible, and has appropriate goals. In light of the above, we then propose improvements for the scheme’s legal and ethical acceptability. (shrink)

Harms and risks to groups and third-parties can be significant in the context of research, particularly in data-centric studies involving genomic, artificial intelligence, and/or machine learning technologies. This article explores whether and how United States federal regulations should be adapted to better align with current ethical thinking and protect group interests. Three aspects of the Common Rule deserve attention and reconsideration with respect to group interests: institutional review board (IRB) assessment of the risks/benefits of research; disclosure requirements in the (...) informed consent process; and criteria for waivers of informed consent. In accordance with respect for persons and communities, investigators and IRBs should systematically consider potential group harm when designing and reviewing protocols, respectively. Research participants should be informed about any potential group harm in the consent process. We call for additional public discussion, empirical research, and normative analysis on these issues to determine the right regulatory and policy path forward. (shrink)

In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This 'empirical turn' is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of (...) the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self-justification and bias and can increase the credibility of the RE reached. (shrink)

The application of machine learning algorithms to healthcare data can enhance patient care while also reducing healthcare worker cognitive load. These algorithms can be used to detect anomalous physiological readings, potentially leading to expedited emergency response or new knowledge about the development of a health condition. However, while there has been much research conducted in assessing the performance of anomaly detection algorithms on well-known public datasets, there is less conceptual comparison across unsupervised and supervised performance on physiological data. (...) Moreover, while heart rate data are both ubiquitous and noninvasive, there has been little research specifically for anomaly detection of this type of data. Considering that heart rate data are indicative of both potential health complications and an individual’s physical activity, this is a rich source of largely overlooked data. To this end, we employed and evaluated five machine learning algorithms, two of which are unsupervised and the remaining three supervised, in their ability to detect anomalies in heart rate data. These algorithms were then evaluated on real heart rate data. Findings supported the effectiveness of local outlier factor and random forests algorithms in the task of heart rate anomaly detection, as each model generalized well from their training on simulated heart rate data to real world heart rate data. Furthermore, results support that simulated data can help configure algorithms to a degree of performance when real labeled data are not available and that this type of learning might be especially helpful in initial deployment of a system without prior data. (shrink)

We explore the availability and use of data in the field of business ethics research. Specifically, we examine an international sample of doctoral dissertations since 1998, categorizing research topics, data collection, and availability of data. Findings suggest that use of only primary data pervades the discipline, despite strong methodological reasons to augment business ethics research with secondary data.

The outcomes of a bibliographic review on political communication, in particular electoral communication in social networks, are presented here. The electoral campaigning are a crucial test to verify the transformations of the media system and of the forms and uses of the linguistic acts by dominant actors in public sphere – candidates, parties, journalists and Gatekeepers. The aim is to reconstruct the first elements of an analytical model on the transformations of the political public sphere, with which to systematize the (...) results of the main empirical research carried out in recent years, in particular those conducted with a promising methodology: Digital Trace Data Analysis. (shrink)

The article analyzes ethnic data collection pertaining to criminal justice in Hungary. With such a sensitive and delicate issue at hand, Hungary has decided on an evasive approach, resisting ethnic data collection by law enforcement authorities. The author argues that this approach has become one of the obstacles in fighting discrimination and ethnic profiling. Moreover, Hungary’s restrictive approach to ethno-national data classification also causes severe constitutional problems in other, noncriminal legal circumstances, where ethnic data is used (...) in the context of additional rights and affirmative protection provided for ethno-national minorities. The first part of the article describes general problems relating to ethnic data collection and analyses of the Hungarian minority protection framework, in particular, the minority self-government structure (a unique constitutional institution). The second part focuses on the criminal justice system; the author’s aim is to show that prohibiting the official recognition and collection of data on ethnicity by criminal justice authorities has potentially ethnically discriminatory consequences. (shrink)

In this paper, missing attribute values in incomplete data sets have three possible interpretations: lost values, attribute-concept values and ‘do not care’ conditions. For rule induction, we use characteristic sets and generalized maximal consistent blocks. Therefore, we apply six different approaches for data mining. As follows from our previous experiments, where we used an error rate evaluated by ten-fold cross validation as the main criterion of quality, no approach is universally the best. Thus, we decided to compare our (...) six approaches using complexity of rule sets induced from incomplete data sets. We show that the smallest rule sets are induced from incomplete data sets with attribute-concept values, while the most complicated rule sets are induced from data sets with lost values. The choice between interpretations of missing attribute values is more important than the choice between characteristic sets and generalized maximal consistent blocks. (shrink)

A curious feature of Belnap’s “useful four-valued logic”, also known as first-degree entailment (FDE), is that the overdetermined value B (both true and false) is treated as a designated value. Although there are good theoretical reasons for this, it seems prima facie more plausible to have only one of the four values designated, namely T (exactly true). This paper follows this route and investigates the resulting logic, which we call Exactly True Logic.

In recent years, critical scholarship has drawn attention to increasing power differentials between corporations that use data and people whose data is used. A growing number of scholars see digital data and information commons as a way to counteract this asymmetry. In this paper I raise two concerns with this argument: First, because digital data and information can be in more than one place at once, governance models for physical common-pool resources cannot be easily transposed to (...) digital commons. Second, not all data and information commons are suitable to address power differentials. In order to create digital commons that effectively address power asymmetries we must pay more systematic attention to the issue of exclusion from digital data and information commons. Why and how digital data and information commons exclude, and what the consequences of such exclusion are, decide whether commons can change power asymmetries or whether they are more likely to perpetuate them. (shrink)