The relatively recent increase in empirical research conducted in business ethics has been accompanied by a growing literature which addresses its present shortcomings and continuing challenges. Particular attention has been focused on the difficulties of obtaining valid and reliable primary data. However, little or no attention has been paid to the use of secondary data. The aim of this paper is to stimulate the interest of business ethics researchers in using secondary data, either as a (...) substitute or complement for primary data, bearing in mind both the benefits and shortcomings of doing so. It is suggested that secondary data not only offer advantages in terms of cost and effort, as conventionally described in research methods books, but also that in certain cases their use may overcome some of the difficulties that particularly afflict business ethics researchers in the gathering of primary data. In order to help business ethicists respond to this call for greater consideration of the potential offered by secondary data, the wide variety of forms that such data may take is indicated and a number of themes regarding their use discussed. (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.

Empirical studies in business ethics often rely on self-reported data, but this reliance is open to criticism. Responses to questionnaires and interviews may be influenced by the subject's view of what the researcher might want to hear, by a reluctance to talk about sensitive ethical issues, and by imperfect recall. This paper reviews the extent to which published research in business ethics relies on interviews and questionnaires, and then explores the possibilities of using secondary data, such as (...) company documents and newspaper reports, as a source for empirical studies in applied ethics. A specific example is then discussed, describing the source material, the method, the development of the research questions, and the way in which reliability and validity were established. In the example, content analysis was used to examine the extent to which the executive virtue of courage was observed or called for in items published in four international daily newspapers, and to explore the meaning which was attributed to "courage" in the papers. (shrink)

This paper considers the use of secondary data analysis in educational research. It addresses some of the promises and potential pitfalls that influence its use and explores a possible role for the secondary analysis of numeric data in the 'new' political arithmetic tradition of social research. Secondary data analysis is a relatively under-used technique in Education and in the social sciences more widely, and it is an approach that is not without its critics. Here (...) we consider two main objections to the use of secondary data: that it is full of errors and that because of the socially constructed nature of social data, simply reducing it to a numeric form cannot fully encapsulate its complexity. However, secondary data also offers numerous methodological, theoretical and pedagogical benefits. Indeed by treating secondary data analysis with appropriate scepticism and respect for its limitations, by demanding that tacit assumptions about the unreliability of secondary data are applied equally to other research methods, and crucially by combining secondary data analysis with small-scale in-depth work, this paper argues for a return to prominence of secondary data analysis in its own right as well as becoming a central component of the new political arithmetic tradition of social research. (shrink)

BackgroundDepression is a prevalent condition that has a significant impact on psychosocial functioning and quality of life. The onset and persistence of depression have been linked to a variety of biological and psychosocial variables. Many of these variables are associated with specific lifestyle characteristics, such as physical activity, diet, and sleep patterns. Some psychosocial determinants have an impact on people’ health-related behavior change. These include personal factors such as sense of coherence, patient activation, health literacy, self-efficacy, and procrastination. This study (...) aims to analyze the association between the severity of depression, lifestyle patterns, and personal factors related to health behavior. It also aims to analyze whether personal factors moderate the relationship between lifestyles and depression.MethodsThis study is a secondary data analysis of baseline data collected at the start of a randomized controlled trial. A sample of 226 patients with subclinical, mild, or moderate depression from primary healthcare centers in two sites in Spain was used, and descriptive, bivariate, multivariate, and moderation analyses were performed. Depression was the primary outcome, measured by Beck II Self-Applied Depression Inventory. Lifestyle variables such as physical exercise, adherence to Mediterranean diet and sleep quality, social support, and personal factors such as self-efficacy, patient activation in their own health, sense of coherence, health literacy, and procrastination were considered secondary outcomes.ResultsLow sense of coherence, poor sleep quality, low patient activation, and sedentarism are predictors of having more depressive symptoms. Moderation analyses were not significant.DiscussionLifestyle and personal factors are related to depressive symptomatology. Our findings reveal that sense of coherence, patient’s activation level, sedentarism, and sleep quality are associated with depression. Further research is needed regarding adherence to Mediterranean diet, minutes walking per week and the interrelationship between lifestyles, personal factors, and depression. (shrink)

BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for (...) patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law. (shrink)

Background: Recent changes to regulatory guidance in the US and Europe have complicated oversight of secondary research by rendering most uses of de-identified data exempt from human subjects oversight. To identify the implications of such guidelines for harms to participants and communities, this paper explores the secondary uses of one de-identified DNA sample collection with limited oversight: the Human Genome Diversity Project (HGDP)-Centre d'Etude du Polymorphisme Humain, Fondation Jean Dausset (CEPH) Human Genome Diversity Panel. Methods: Using a (...) combination of keyword and cited reference search, we identified English-language scientific articles published between 2002 and 2009 that reported analysis of HGDP Diversity Panel samples and/or data. We then reviewed each article to identify the specific research use to which the samples and/or data was applied. Secondary uses were categorized according to the type and kind of research supported by the collection. Results: A wide variety of secondary uses were identified from 148 peer-reviewed articles. While the vast majority of these uses were consistent with the original intent of the collection, a minority of published reports described research whose primary findings could be regarded as controversial, objectionable, or potentially stigmatizing in their interpretation. Conclusions: We conclude that potential risks to participants and communities cannot be wholly eliminated by anonymization of individual data and suggest that explicit review of proposed secondary uses, by a Data Access Committee or similar internal oversight body with suitable stakeholder representation, should be a required component of the trustworthy governance of any repository of data or specimens. (shrink)

This paper conducts a comparative analysis of data governance mechanisms concerning the secondary use of health data in Taiwan and the European Union (EU). Both regions have adopted distinctive approaches and regulations for utilizing health data beyond primary care, encompassing areas such as medical research and healthcare system enhancement. Through an examination of these models, this study seeks to elucidate the strategies, frameworks, and legal structures employed by Taiwan and the EU to strike a delicate balance (...) between the imperative of data-driven healthcare innovation and the safeguarding of individual privacy rights. This paper examines and compares several key aspects of the secondary use of health data in Taiwan and the EU. These aspects include data governance frameworks, legal and regulatory frameworks, data access and sharing mechanisms, and privacy and security considerations. This comparative exploration offers invaluable insights into the evolving global landscape of health data governance. It provides a deeper understanding of the strategies implemented by these regions to harness the potential of health data while upholding the ethical and legal considerations surrounding its secondary use. The findings aim to inform best practices for responsible and effective health data utilization, particularly in the context of medical AI applications. (shrink)

In genomic research, cohort and large-scale population studies are proliferating along with accompanying infrastructures (databases and biobanks). Population-based research links samples and data from multiple sources often obtained for other purposes. The normative frameworks of many countries are largely based on 1980 OECD principles which limit the uses of personal data, especially for secondary purposes. These limits, now found in legislation, policies and research guidelines, pose major barriers to population-based research.This text examines similarities and differences between epidemiology, (...) public health research and genomics. It also distinguishes between primary and secondary uses of personal information. In a comparative and critical analysis of the normative landscapes of five countries, Québec (Canada), Germany, Australia, the United States and the United Kingdom, three barriers are identified: the impracticability of re-consent; the shortcomings of the review process (ethics and privacy) and certain multi-jurisdictional issues. Recommendations are proposed. (shrink)

New data-driven ideas of healthcare have increased pressures to reform existing data infrastructures. This article explores the role of data governing institutions during a reform of both secondary health data infrastructure and related legislation in Finland. The analysis elaborates on recent conceptual work on data journeys and data frictions, connecting them to institutional and regulatory issues. The study employs an interpretative approach, using interview and document data. The results show the stark contrast (...) between the goals of open and Big Data inspired reforms and the existing institutional realities. The multiple tensions that emerged during the process indicate how data frictions emanate to the institutional level, and how mundane data practices and institutional dynamics are intertwined. The article argues that in the Finnish case, public institutions acted as sage-guards of public interest, preventing more controversial parts from passing. Finally, it argues that initiating regulatory and infrastructural reforms simultaneously was beneficial for solving the tensions of the initiative and analysing either side separately would have produced misleading accounts of the overall initiative. The results highlight the benefits of analysing institutional dynamics and data practices as connected issues. (shrink)

BackgroundThe advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as (...) a promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec.MethodsEight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software.ResultsOur findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions.ConclusionsThis qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec. (shrink)

In this article we provide an in-depth description of a new model of informed consent called ‘meta consent’ and consider its practical implementation. We explore justifications for preferring meta consent over alternative models of consent as a solution to the problem of secondary use of health data for research. We finally argue that meta consent strikes an appropriate balance between enabling valuable research and protecting the individual.

BackgroundThis paper discusses the contentious issue of reuse of stored biological samples and data obtained from research participants in past clinical research to answer future ethical and scientifically valid research questions. Many countries have regulations and guidelines that guide the use and exportation of stored biological samples and data. However, there are variations in regulations and guidelines governing the reuse of stored biological samples and data in Sub-Saharan Africa including Malawi.DiscussionThe current research ethics regulations and guidelines in (...) Malawi do not allow indefinite storage and reuse of biological samples and data for future unspecified research. This comes even though the country has managed to answer pertinent research questions using stored biological samples and data. We acknowledge the limited technical expertise and equipment unavailable in Malawi that necessitates exportation of biological samples and data and the genuine concern raised by the regulatory authorities about the possible exploitation of biological samples and data by researchers. We also acknowledge that Malawi does not have bio-banks for storing biological samples and data for future research purposes. This creates room for possible exploitation of biological samples and data collected from research participants in primary research projects in Malawi. However, research ethics committees require completion and approval of material transfer agreements and data transfer agreements for biological samples and data collected for research purposes respectively and this requirement may partly address the concern raised by the regulatory authorities. Our concern though is that there is no such requirement for biological samples and data collected from patients for clinical or diagnostic purposes.SummaryIn conclusion, we propose developing a medical data and material transfer agreement for biological samples and data collected from patients for clinical or diagnostic purposes in both public and private health facilities that may end up in research centers outside Malawi. We also propose revision of the current research ethics regulations and guidelines in Malawi in order to allow secondary use of biological samples and data collected from primary research projects as a way of maximizing the use of collected samples and data. Finally, we call for consultation of all stakeholders within the Malawi research community when regulatory authorities are developing policies that govern research in Malawi. (shrink)

The increased use of information technology in every day health care creates vast amounts of stored health data that can be used for research. The secondary research use of routinely collected data raises questions about appropriate consent mechanisms for such use. One option is meta consent where individuals state their own consent preferences in relation to future use of their data, e.g. whether they want the data to be accessible to researchers under conditions of specific (...) consent, broad consent, blanket consent or not at all. This study investigates whether meta consent preferences can be successfully elicited by a smartphone application in the adult Danish population. A smartphone app was developed for the elicitation of meta consent preferences. An invitation to use the app was distributed to a stratified, representative sample of the Danish adult population. The meta consent choices, the use of the app, user experience data, and demographic data were logged and analysed statistically using IBM SPSS version 20. Of 1000 potential respondents 221 used the app. One hundred eighty-eight of the respondents were female and 103 male. The age range was 19 to 79 years with an average of 51 years. Most users indicate 1) that they find the choices they are asked to make easy to understand, 2) that the application is easy to use, and 3) that this kind of choice should be offered to people. It is possible to collect meta consent preferences in the general, adult population using a smartphone app. (shrink)

About thirty years ago, when the Internet started to be commercialised, access to the medium became a topic of research and debate. Up-to-date evidence about key predictors, such as age, is crucial because of the Internet's ever-changing nature and the challenges associated with gaining access to it. This paper aims to give an overview of New Zealand's Internet access trends and how they relate to age. It is based on secondary analysis of data from a larger online panel (...) survey with 1,001 adult respondents. The Chi-square test of independence and Cramer's V were used in the analysis. The study provides new evidence to understand the digital divide. Specifically, it uncovers a growing disparity in the quality of Internet connectivity. Even though fibre is the most common type of broadband connection at home, older adults are less likely to have it and more likely to use wireless broadband, which is a slower connection type. Additionally, a sizable majority of people in all age categories have favourable opinions on the Internet. Interestingly, this was more prevalent among older people, although they report an increased concern about the security of their personal information online. The implications of the results are discussed and some directions for future research are proposed. (shrink)

Secondary education around the world has been significantly disrupted by covid-19. Students have been forced into new ways of independent learning, often using remote technologies, but without the social nuances and direct teacher interactions of a normal classroom environment. Using data from the School Attitudes Survey—which surveys students regarding the perceived level of difficulty, anxiety level, self-efficacy, enjoyability, subject relevance, and opportunities for creativity with regards to each of their school subjects—this study examines students' responses to this disruption (...) from two very different schools with two very different experiences of the pandemic. This paper reports on the composite attitudinal profiles of students in the senior secondary levels at each school. The findings challenged our expectation that the increased difficulty and anxiety caused by the disruption would reduce perceived opportunities for creativity. Indeed, our analyses showed that the students at both schools demonstrated generally positive attitudes toward their learning and strongly associated opportunities for creativity with other attitudinal constructs including enjoyability, subject relevance, and self-efficacy. These complex associations made by the students appear to have buffered the impacts of the disruption, and they may even have supported creative resilience. (shrink)

Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data (...) may improve future policy determinations. (shrink)

The aim of this study is to analyse how secondary stakeholders influence managerial decision-making on Corporate Social Responsibility disclosure. Based on stakeholder salience theory, we empirically investigate whether differences in environmental disclosure among companies are systematically related to differences in the level of power, urgency and legitimacy of the environmental non-governmental organisations with which these companies are confronted. Using proprietary archival data for an international sample of 199 large companies, our results suggest that differences in environmental disclosures between (...) companies are mainly associated with differences between their environmental stakeholders’ legitimacy. The effects of power and urgency are of an indirect nature, as they are mediated by legitimacy. This study improves our understanding of CSR disclosure by demonstrating that, next to the well-documented effect of company characteristics, stakeholder characteristics are also important. Besides, it provides scarce empirical evidence that not only primary stakeholders, but also secondary stakeholders are influential with regards to management decision-making. And more specifically, it offers insight into why some stakeholder groups are better able to influence disclosure decisions than other. The results also have important practical implications for managers of both environmental NGOs and large companies. For managers of environmental NGOs the results provide evidence of the most successful tactics for having their environmental information demands satisfied by companies. For company management the results provide insights into the most important stakeholder characteristics, on the basis of which they may develop strategies for proactively disclosing environmental information. (shrink)

This paper is concerned with English noun phrases that denote generalized instances: they do not refer to actual spatio-temporal instances, but to virtual ones that are abstracted from a limited number of actual instances, e.g., a student in Three times, a student complained (Langacker, Foundations of Cognitive Grammar. Volume II: Descriptive application, Stanford University Press, 1991, Dynamicity, fictivity, and scanning: The imaginative basis of logic and linguistic meaning, Cambridge University Press, 2005, forthcoming). Langacker likens generalized instances to generic ones, which (...) constitute “global” generalizations over all actual instances of a type. On the basis of authentic data, I argue that, even though the profiled instance denoted by generic and generalized noun phrases is similar, the way the respective instances are accessed in discourse is very different. My data set consists of English noun phrases that are explicitly marked for generalized instantiation by the addition of a secondary determiner such as same in The twin brothers bought the same car or kind of in There was no way we could match that kind of offer. I compare noun phrases of four sets of secondary determiners, viz. adjectives of multiple exposure (usual), of identity (same, identical), of similarity (similar, comparable) and type noun constructions (kind of/type of/sort of). These data also allow me to refine the concept of generalized instantiation in terms of its semantic subtypes, the semantic interaction between secondary determiner and primary determiner, and the selection criteria for secondary determiners that can express it. (shrink)

Development in the students’ sense of belonging to school, their commitment to each other, makes them feel happier and peaceful at school. In addition, this situation has a very important role in terms of students' academic, social and psychological development. The purpose of this study is to evaluate the belonging circumstance to school of the secondary students in terms of various variables. This study has applied to 1187 high school students studying in different types of high school selected by (...) random sampling in Ankara and Çankırı. While collecting data, Sense of Belonging to School Scale developed by Goodnew and adapted to Turkish by Sarı has been used. The validity and reliability study of the scale has repeated also in this study. To evaluate the data obtained from the scale, Mann WhitneyU test and Kruskal Wallis test statistics have been utilized. At the end of the study, the students’ sense of belonging to the school has meaningfully differed from their gender, type of high school, continuing class and school preference. On the other hand, it has been found that there is no significant difference between the sense of belonging to the school and the city in which they live. In addition, in order to determine the reasons for the sense of belonging to the school, the reasons of the students' answers to the 9th, 16th and 17th questions were evaluated. The average value that students obtained from OADÖ was found as 3.28. It can be stated that students' sense of belonging to school is above the average value (3.00). (shrink)

BackgroundSharing de-identified individual-level health research data is widely promoted and has many potential benefits. However there are also some potential harms, such as misuse of data and breach of participant confidentiality. One way to promote the benefits of sharing while ameliorating its potential harms is through the adoption of a managed access approach where data requests are channeled through a Data Access Committee (DAC), rather than making data openly available without restrictions. A DAC, whether a (...) formal or informal group of individuals, has the responsibility of reviewing and assessing data access requests. Many individual groups, consortiums, institutional and independent DACs have been established but there is currently no widely accepted framework for their organization and function.Main textWe propose that DACs, should have the role of both promotion of data sharing and protection of data subjects, their communities, data producers, their institutions and the scientific enterprise. We suggest that data access should be granted by DACs as long as the data reuse has potential social value and provided there is low risk of foreseeable harms. To promote data sharing and to motivate data producers, DACs should encourage secondary uses that are consistent with the interests of data producers and their own institutions. Given the suggested roles of DACs, there should be transparent, simple and clear application procedures for data access. The approach to review of applications should be proportionate to the potential risks involved. DACs should be established within institutional and legal frameworks with clear lines of accountability, terms of reference and membership. We suggest that DACs should not be modelled after research ethics committees (RECs) because their functions and goals of review are different from those of RECs. DAC reviews should be guided by the principles of public health ethics instead of research ethics.ConclusionsIn this paper we have suggested a framework under which DACs should operate, how they should be organised, and how to constitute them. (shrink)

The purpose of this study was to examine student perceptions of teaching behavior. Additionally the aim was to examine if teacher characteristics (educational level, gender, and teaching experience) could explain differences in student perceptions of their teachers. Teaching behavior was studied from the research on teaching and teacher effectiveness perspective. Secondary students (N = 7,114), taught by 410 teachers in Spain, participated in the study. Survey data were analyzed using non-parametric tests, Kruskal-Wallis, U Mann-Whitney with Bonferroni correction, and (...) the analysis of effect sizes. Furthermore, a regression model was applied. Results showed that teaching behavior was perceived as sufficient to good, depending on the teaching behavior domain. Results indicated interesting differences between lower secondary education, upper secondary education and vocational education and training teachers. The effect size values (rU statistic) ranged between 0.43 and 0.63, highlighting the significant effect of teachers’ teaching experience on the six teaching skills domains: learning climate, efficient classroom management, clarity of instruction, activating teaching, differentiation, and teaching learning strategies. Those teachers with less teaching experience were the ones who showed higher scores. Findings from the regression model showed that educational level had a significant predictive effect on the six teaching skills domains, mainly for male teachers. However, in several domains female teachers were perceived by students to outperform their male counterparts. (shrink)

BackgroundResearch using data from medical care promises to advance medical science and improve healthcare. Academia is not the only sector that expects such research to be of great benefit. The research-based health industry is also interested in so-called ‘real-world’ health data to develop new drugs, medical technologies or data-based health applications. While access to medical data is handled very differently in different countries, and some empirical data suggest people are uncomfortable with the idea of companies (...) accessing health information, this paper aims to advance the ethical debate about secondary use of medical data generated in the public healthcare sector by for-profit companies for medical research (ReuseForPro).MethodsWe first clarify some basic concepts and our ethical-normative approach, then discuss and ethically evaluate potential claims and interests of relevant stakeholders: patients as data subjects in the public healthcare system, for-profit companies, the public, and physicians and their healthcare institutions. Finally, we address the tensions between legitimate claims of different stakeholders in order to suggest conditions that might ensure ethically sound ReuseForPro.ResultsWe conclude that there are good reasons to grant for-profit companies access to medical data if they meet certain conditions: among others they need to respect patients’ informational rights and their actions need to be compatible with the public’s interest in health benefit from ReuseForPro. (shrink)

BackgroundSystems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology ; “big data” statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers working (...) to generate systems medicine knowledge and clinicians working to apply it.DiscussionThis article focuses on three key challenges: First, we will discuss the conflicts in decision-making that can arise when healthcare providers committed to principles of experimental medicine or evidence-based medicine encounter individualized recommendations derived from computer algorithms. We will explore in particular whether controlled experiments, such as comparative effectiveness trials, should mediate the translation of systems medicine, or if instead individualized findings generated through “big data” approaches can be applied directly in clinical decision-making. Second, we will examine the case of the Riyadh Intensive Care Program Mortality Prediction Algorithm, pejoratively referred to as the “death computer,” to demonstrate the ethical challenges that can arise when big-data-driven scoring systems are applied in clinical contexts. We argue that the uncritical use of predictive clinical algorithms, including those envisioned for systems medicine, challenge basic understandings of the doctor-patient relationship. Third, we will build on the recent discourse on secondary findings in genomics and imaging to draw attention to the important implications of secondary findings derived from the joint analysis of data from diverse sources, including data recorded by patients in an attempt to realize their “quantified self.”SummaryThis paper examines possible ethical challenges that are likely to be raised as systems medicine to be translated into clinical medicine. These include the epistemological challenges for clinical decision-making, the use of scoring systems optimized by big data techniques and the risk that incidental and secondary findings will significantly increase. While some ethical implications remain still hypothetical we should use the opportunity to prospectively identify challenges to avoid making foreseeable mistakes when systems medicine inevitably arrives in routine care. (shrink)

*PSA 2016, symposium on “Data in Time: Epistemology of Historical Data” organized by Sabina Leonelli, 5 November 2016* *See published version: "Radiocarbon Dating in Archaeology: Triangulation and Traceability" in Data Journeys in the Sciences (2020) - link below* Archaeologists put a premium on pressing “legacy data” into service, given the notoriously selective and destructive nature of their practices of data capture. Legacy data consist of material and records that been assembled over decades, sometimes centuries, (...) often by means and for purposes long since discredited or superseded. The primary strategies by which archaeologists put the data to work for new purposes are, I argue, secondary retrieval, recontextualization, and experimental modelling. I focus here on a particularly telling and complex example of secondary retrieval: the extraction of new data from old by means of radiocarbon dating. This is by no means a straightforward process of retrieving physical samples from legacy data to which 14C techniques can be applied that can, on their own, decisively settle chronological questions. When Libby’s post-war radiocarbon revolution got under way, it was expected to establish an absolute chronology that would render obsolete the local and relative chronologies on which archaeologists had long relied. Transformative though it has been, bringing these tools of physical dating to bear on archaeological problems has been a long, tortuous process, now described as proceeding through two subsequent radiocarbon revolutions. The second was an extended process of calibration by which 14C chronologies were corrected and refined, often against the very lines of evidence they were meant to displace. The most recent, a “pragmatic Bayesian” approach to archaeological dating, is motivated by concern that, no matter how much it is refined, radiocarbon dating cannot on its own resolve the chronological problems that archaeologists address; the challenge, its advocates argue, is to ‘fully integrate archaeological information with 14C dating in order to address archaeologically relevant timescales and episodes’. This is a genre of “robustness” reasoning that illustrates its epistemic risks as well as its appeal. As recent philosophical debate makes clear, it depends on appeals to the convergence of independent lines of evidence that may have more rhetorical than epistemic force and that may be spurious. Drawing on this philosophical literature I identify a set of conditions that must be met if these risks are to be avoided, all of which are an explicit focus of debate in cases of contestation about and reconciliation of chronologies based on legacy data. (shrink)

Property rights of personal data have been advocated for some time. From the perspective of economics of law some argued that they could lower transaction costs for contracts involving personal data. This may be the case, but new transaction costs are introduced by propertization and the issue has not been settled. In this paper, I focus on a different and potentially more important aspect. In the actual situation, data collectors externalize costs and internalize benefits. An ownership regime (...) that enables every citizen to hold a personal data account, like a bank account, and that gives people ownership rights over secondary use of personal data could correct these misallocations. I hope to shed new light on the normative implications of the issue by offering normative justifications for property rights of personal data (Sections 2–4). Secondly, I present fundamental goals and building blocks of a property regime of personal data (Section 5) and, thirdly, I illustrate how income from personal data ownership could for instance contribute to financing pensions under proper regulation (Section 6). (shrink)

Property rights of personal data have been advocated for some time. From the perspective of economics of law some argued that they could lower transaction costs for contracts involving personal data. This may be the case, but new transaction costs are introduced by propertization and the issue has not been settled. In this paper, I focus on a different and potentially more important aspect. In the actual situation, data collectors externalize costs and internalize benefits. An ownership regime (...) that enables every citizen to hold a personal data account, like a bank account, and that gives people ownership rights over secondary use of personal data could correct these misallocations. I hope to shed new light on the normative implications of the issue by offering normative justifications for property rights of personal data (Sections 2–4). Secondly, I present fundamental goals and building blocks of a property regime of personal data (Section 5) and, thirdly, I illustrate how income from personal data ownership could for instance contribute to financing pensions under proper regulation (Section 6). (shrink)

In many areas, technology has facilitated many things, diagnosing diseases, regulating traffic and teaching students in schools rely on Intelligent systems to name a few. At present, traditional classroom-based education is no longer the most appropriate in schools. From here, the idea of intelligent e-learning for students to increase their culture and keep them updated in life began. E-learning has become an ideal solution, relying on artificial intelligence, which has a footprint in this through the development of systems based on (...) education without a teacher taking into account the individual differences of students. This study describes intelligent tutoring system for teaching the Data Manipulation Language (DML) Commands Using SQLite to non IT students to overcome the difficulties they face. The System was built as education system by using the researcher own authoring tool that based on mobile and web App. The basic idea of this system is a systematic introduction into the concept of Database and its DML query. The system presents the topic of DML Commands, help student to execute what they are learn from the system content using the practical part of the system and administers automatically adapted at run time to the student’s individual growth. The system was assessed by a group of teachers and students and the outcome showed as 91% from the database specialists, 94% from Diploma students group and 89% from the secondary school students group. (shrink)

The aim of this study is to investigate students’ conceptions about proof in mathematics and mathematics teaching. A five‐point Likert‐type questionnaire was administered in order to gather data. The sample of the study included 33 first‐year secondary school mathematics students . The data collected were analysed and interpreted using the methods of qualitative and quantitative analysis. The results have revealed that the students think that mathematical proof has an important place in mathematics and mathematics education. The students’ (...) studying methods for exams based on imitative reasoning which can be described as a type of reasoning built on copying proof, for example, by looking at a textbook or course notes proof or through remembering a proof algorithm. Moreover, they addressed to the differences between mathematics taught in high school and university as the main cause of their difficulties in proof and proving. (shrink)

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on (...) health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest. (shrink)

BackgroundData processing of health research databases often requires a Data Protection Impact Assessment to evaluate the severity of the risk and the appropriateness of measures taken to comply with the European Union General Data Protection Regulation. We aimed to define and apply a comprehensive method for the evaluation of privacy, data governance and ethics among research networks involved in the EU Project Bridge Health.MethodsComputerised survey among associated partners of main EU Consortia, using a targeted instrument designed by (...) the principal investigator and progressively refined in collaboration with an international advisory panel. Descriptive measures using the percentage of adoption of privacy, data governance and ethical principles as main endpoints were used for the analysis and interpretation of the results.ResultsA total of 15 centres provided relevant information on the processing of sensitive data from 10 European countries. Major areas of concern were noted for: data linkage, access and accuracy of personal data and anonymisation procedures. A high variability was noted in the application of privacy principles.ConclusionsA comprehensive methodology of Privacy and Ethics Impact and Performance Assessment was successfully applied at international level. The method can help implementing the GDPR and expanding the scope of Data Protection Impact Assessment, so that the public benefit of the secondary use of health data could be well balanced with the respect of personal privacy. (shrink)

This article examines the definitions of literacy in operation in secondary schools, and the relationship between official literacy policy and the practices of the agents responsible for implementing this policy. We trace the history of national 'policy' back to the Language Across the Curriculum movement of the 1970s as it provides an illustrative point of comparison with the first five years of the National Literacy Strategy. Drawing on empirical data which illuminate the views, perceptions and practices of key (...) agents on a number of levels, we critically review the concept of 'school literacy' promoted in government policy, defining it as 'school-centric literacy' and question its ability to facilitate participation in the practices associated with the media and technological literacies which are increasingly a feature of school life. There is evidence of some unplanned effects of the current national policy but also that levels of agency, for literacy teachers in particular, may be rapidly diminishing. (shrink)

This study of the patterns of the keeping of herpetofauna animals and associated animal welfare issues among secondary school pupils in the United Kingdom suggests that a large proportion of the animals kept as companion animals by this group are indigenous species. In comparison with purchased species, these captured animals, even those normally long-lived, appear to suffer a high rate of mortality. Relatively large numbers of escape- and food-related deaths among these animals imply that many are not furnished with (...) suitable vivaria or adequate care. Traded reptile and amphibian species were reported to have been kept by nearly 40% of the students who said they had kept herpetofauna, and the proportions of most taxa reflected their availability in shops. Data concerning students' opinions about their own care-knowledge appeared to support the general conclusion that students have much to learn about keeping reptiles and amphibians. These findings are considered in relation to issues of animnl welfare and herpetofauna conservation. Their ramifications for school-based education about reptiles and amphibians are also discussed. (shrink)

Great apes show behavioural evidence for secondary representation similar to that of children of about two years of age. However, there is no convincing evidence for metarepresentation in apes. A good evolutionary interpretation should be parsimonious and must bring developmental and comparative data in accord. I propose a model based on the work of Perner (1991) and close by pointing out a logical flaw in Heyes’ second proposed experiment.

This paper is about the experience of secondary headship selection. Using data from career history interviews with 20 headteachers, 10 men and 10 women, from two Midlands educational authorities, the paper demonstrates some of the different procedures and processes used to select headteachers. Then by comparing the experiences of the long‐in‐post and recently appointed heads, aspects of continuity and change in the headteacher role are explored. The paper argues that although the processes and the selectors’ perceptions of the (...) appropriate candidates have changed, nevertheless other features such as gender, networking and reputing continue to be important aspects of the headship selection process. (shrink)

BackgroundCare.data was a programme of work led by NHS England for the extraction of patient-identifiable and coded information from general practitioner records for secondary uses. This study analyses the forms which enabled patients to opt out.MethodsTheoretical sampling and summative content analysis were used to collect and analyse dissent forms used by patients to opt out from care.data. Domains included basic information about the programme, types of objections and personal details required for identification purposes.ResultsOne hundred opt-out forms were (...) analysed. Fifty-four forms mentioned that this programme was run by NHS England. 81 forms provided two types of objections to data-sharing, and 15 provided only one objection. Only 26 forms mentioned that direct care would not be affected and 32 that patients maintain their right to opt back anytime. All but one of the opt-out forms we reviewed requested the name of the person wishing to opt out. 94 required a date of birth and 33 an NHS number. 82 required an address, 42 a telephone number and 7 an email address.ConclusionsNumbers of patients opting out should be treated with caution, because the variability of information provided and the varied options for dissent may have caused confusion among patients. To ensure that dissent is in accordance with individual preferences and moral values, we recommend that well-designed information material and standardised opt-out forms be developed for such data-sharing initiatives. (shrink)

Many Western nations are emphasizing the importance of population health across health care delivery organizations and education systems. Despite significant momentum to integrate population health into nursing practice, a parallel effort to examine how these efforts impact practicing nurses' views of their professional role and work identity has not occurred. This secondary qualitative analysis, employing an abductive approach, explored processes public health nurses use in creating and maintaining their work identity through three organizing themes: narrative self‐identity, mandated identity, and (...) identity as struggle. The analysis was based on interview data collected from 30 US public health nurses residing in 17 states. ‘Being a real nurse’ describes public health nurses' efforts to balance a contradictory work identity where at times they are expected to focus on populations and at other times, on individuals. The identity work revealed through this study should be further explicated and specific strategies developed for stabilizing a work identity for public health nurses, as well as for any nurse charged with a population health role. (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is (...) judged to be of particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research, it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments (...) for a moral obligation to disclose individual research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants. (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)

This paper considers the subjectivation of students in light of the increasing amounts of digital data that are now being produced within schools. Taking a lead from critical data studies and the sociology of numbers, the paper draws on staff interviews in three Australian secondary schools to explore the various types of student data being generated, and the forms of student subjectivities that result. In particular, the paper contrasts the ‘holistic’ possibilities that some school leaders and (...) administrators ascribe to data in terms of expanding the capacity to ‘know’ students, against the limited ways that data is actually being used within the schools. Most notably, the paper details how digital data appears to be configured within schools’ official data procedures and practices to build student subjectivities and position students in narrow terms of performance and attendance. The paper also highlights how teachers make practical use of these limited data ‘profiles’ in a relational manner – as a way of stimulating dialogue with students to know them better, rather than a source of precise calculation. In this sense, the paper considers how ‘data’ might be reframed in educational discourse as a practical starting-point for teacher inquiry and professional judgment rather than an imagined source of all-encompassing knowledge. (shrink)

As sharing and secondary research use of biospecimens increases, IRBs and researchers face the challenge of protecting and respecting donors without comprehensive regulations addressing the human subject protection issues posed by biobanking. Variation in IRB biobanking policies about these issues has not been well documented.

This research tackled the challenges public secondary schools in Sagbayan District, Bohol, faced regarding records management. The study employed a mixed research design, combining both descriptive-qualitative and descriptive- quantitative methods. The qualitative phase involved conducting in-depth interviews and focus group discussions with relevant stakeholders involved in records management. On the other hand, the quantitative phase utilized survey questionnaires to gather data from relevant stakeholders to determine the acceptability of the proposed MIS among end-users. The first phase findings revealed (...) various challenges in records management faced by the schools, such as inefficient manual record-keeping systems, difficulties in data retrieval, and the risk of data loss due to inadequate backup procedures. These challenges highlighted the need for a comprehensive, technology-driven solution to streamline records management processes and ensure data security. The evaluation results in the second phase showed that the developed Management Information System (MIS) was well-accepted among the end users. The absence of any significant difference in the level of acceptability among the participants further validated the system's suitability for addressing their specific needs. The successful implementation of the MIS proved to be an effective solution to the records management challenges faced by the public secondary schools in Sagbayan District, Bohol. (shrink)

This paper constructs a predictive model of student reading literacy based on data from students who participated in the Program for International Student Assessment from four provinces/municipalities of China, i.e., Beijing, Shanghai, Jiangsu and Zhejiang. We calculated the contribution of influencing factors in the model by using eXtreme Gradient Boosting algorithm and sHapley additive exPlanations values, and get the following findings: Factors that have the greatest impact on students’ reading literacy are from individual and family levels, with school-level factors (...) taking a relative back seat. The most important influencing factors at individual level are reading metacognition and reading interest. The most important factors at family level are ESCS and language environment, and dialect is negative for reading literacy, whereas proficiency in both a dialect and Mandarin plays a positive role. At the school level, the most important factors are time dedicated to learning and class discipline, and we found that there is an optimal value for learning time, which suggests that reasonable learning time is beneficial, but overextended learning time may make academic performance worse instead of improving it. (shrink)

This article examines ethical concerns surrounding research on minority issues. Specifically, it addresses whether researchers have an obligation to consider the impact that minority research can have on vulnerable populations and their own backgrounds before conducting or assessing minority research for publication. The article argues for such an obligation mainly from a consequentialist perspective and then explores possible strategies for assessing and meeting that obligation. Finally, it explores the possible negative secondary effects of those strategies and censorship concerns.

We expect Big Data methods to contribute to research with results that are not inferior to those attained in other ways but possibly better, or hard or impossible to generate in other ways. Those who apply these methods may also aspire to augment the arsenal of research methods, offer surrogates for existing research designs, and re-orient research. Moreover, we can critically examine the institutional, societal and political effects of the Big Data methods and the conditions for the solid (...) institutionalization of these methods in social and political research. To reach its primary objective, this article elaborates conclusions on how Big Data methods, not only by means of their ‘social life’ but also by their ‘political life’, may influence the institutionalization of social and political research. To reach its secondary objective, the article re-examines a study of budgetary legislation in 13 countries carried out by means of Big Data methods to draw conclusions concerning the augmentation of the arsenal of research methods, the surrogation of existing research designs, and the re-orientation of research. (shrink)

The current COVID-19 crisis may have an impact on the mental health of professionals working on the frontline, especially healthcare workers due to the increase of occupational psychosocial risks, such as emotional exhaustion and secondary traumatic stress. This study explored job demands and resources during the COVID-19 crisis in predicting emotional exhaustion and STS among health professionals. The present study is a descriptive and correlational cross-sectional design, conducted in different hospitals and health centers in Spain. The sample consisted of (...) 221 health professionals with direct involvement in treating COVID-19. An online survey was created and distributed nationwide from March 20 to April 15 which assessed: sociodemographic and occupational data, fear of contagion, contact with death/suffering, lack of material and human protection resources, challenge, emotional exhaustion, and STS. Descriptive findings show high levels of workload, contact with death/suffering, lack of MHPR and challenge, and are moderately high for fear of contagion, emotional exhaustion, and STS. We found an indirect significant effect of lack of MHPR on predicting emotional exhaustion through the workload and on STS through fear of contagion, contact with death/suffering, and workload. To conclude, this study examines the immediate consequences of the crisis on health professionals' well-being in Spain, emphasizing the job demands related to COVID-19 that health professionals are facing, and the resources available in these health contexts. These findings may boost follow-up of this crisis among health professionals to prevent them from long-term consequences. (shrink)