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 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)

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)

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)

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 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 aims to provide a description of how authors publishing in medical ethics journals have made use of empirical research data in papers on the topic of gamete or embryo donation by means of references to studies conducted by others. Rather than making a direct contribution to the theoretical methodological literature about the role empirical research data could play or should play in ethics studies, the focus is on the particular uses of these data and the (...) problems that can be encountered with this use. In the selection of papers examined, apart from being used to describe the context, empirical evidence was mainly used to recount problems that needed solving. Few of the authors looked critically at the quality of the studies they quoted, and several instances were found of empirical data being used poorly or inappropriately. This study provides some initial baseline evidence that shows empirical data, in the form of references to studies, are sometimes being used in inappropriate ways. This suggests that medical ethicists should be more concerned about the quality of the empirical data selected, the appropriateness of the choice for a particular type of data and the correct integration of this evidence in sound argumentation. Given that empirical data can be misused also when merely cited instead of reported, it may be worthwhile to explore good practice requirements for this type of use of empirical data in medical ethics. (shrink)

Secondary use of clinical data in research or learning activities (SeConts) has the potential to improve patient care and biomedical knowledge. Given this potential, the ethical question arises whether physicians have a professional duty to support SeConts. To investigate this question, we analyze prominent international declarations on physicians’ professional ethics to determine whether they include duties that can be considered as good reasons for a physicians’ professional duty to support SeConts. Next, we examine these documents to identify professional (...) duties that might conflict with a potential duty of physicians to support SeConts. (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)

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.

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)

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)

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)

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)

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 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)

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)

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)

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)

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)

*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)

The Covid‐19 crisis has underscored the importance of the collection and analysis of clinical and research data and specimens for ongoing work. The federal government recently completed a related revision of the human subjects research regulations, founded in the traditional principles of research ethics, but in this commentary, we argue that the analysis underpinning this revision overemphasized the importance of informed consent, given the low risks of secondary research. Governing the interests of a community is different from governing (...) the interests of individuals, and here we suggest that, moving forward, the analyses of the risks of secondary research protocols be assessed from the perspective of the former. (shrink)

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)

Compared with data that is initially collected for research purposes, the mandatory authorization of a government database for secondary use deserves greater scrutiny because it consists of information that is collected initially for administrative purposes. Using the case of Taiwan’s National Health Insurance (NHI) Database as an example, this paper analyzes the ethical issues that emerge when the research participants are “participated” in studies without their consent, according to the current policy. The proponents of secondary use for (...) research purposes maintain that the authorized use of the NHI Database is necessary for public interests, while the opponents argue that the potential lack of democratic accountability and the infringement on people’s rights to privacy and information autonomy is unwarranted. Drawing on the solidarity‐based approach, this paper proposes a temporal solution as a possible reform direction for better ethical justification of the secondary use of the NHI Database. (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)

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)

Academic integrity is a vital pedagogical responsibility that educational institutions should explicitly address. One of the best ways to uphold academic integrity is to create a culture of academic integrity throughout the school. This is especially imperative at high schools where students develop their moral identity because students who act dishonestly at high school will likely behave accordingly in post-secondary education and ultimately be dishonest in familial and professional settings. Creating a culture of academic integrity is a challenging, long (...) and multifaceted journey. In this respect, this exploratory case study set out to create a culture of academic integrity at a high school in Türkiye and explore what facilitates and impedes the process. We followed Stephens’ (2016) Multilevel Intervention Model and implemented a School-Wide Education program to guide us through the process. We conducted various activities throughout one academic year, from seminars to competitions. At the end of the term, we conducted individual and focus group interviews with the members of the school community and analyzed the interview data to identify facilitators and barriers of the process. The analysis yielded five facilitators (1) creating buy-in, (2) administrative embracement and support, (3) activities that promote student involvement, (4) external expert and school collaboration as praxis, and (5) policy as the blueprint and five barriers (1) deficiencies in responding academic misconduct, (2) prioritization of academic success over academic integrity, (3) teacher resistance against change, (4) exam-based assessment design, and (5) timing of the activities. Each theme was discussed in detail, and recommendations were made for high schools which set out on a journey of creating academic integrity culture. (shrink)

Tracing graduates has become an imperative for higher education institutions much more during the pandemic. This tracer determined the employment and employability status of the 2019 BSE graduates and identified the competencies they adequately acquired and deemed vital for work. It used descriptive design, and data were collected from the 103 graduates through a google form with open and closed-ended questions administered between November and December 2020. Results revealed that most of the graduates had been employed in teaching and (...) teaching-related jobs but mostly in contractual arrangements within the first and second six months after graduation. Many had their first jobs with meager salaries from the private sector. Communication, pedagogy, information communication technology, time management, and flexibility were the top competencies they adequately acquired and were beneficial in work. The study concluded that these graduates had acquired 21st-century skills in their respective degree programs. These results have corresponding implications for future research in confirming the most employable skills in secondary teaching. As recommended, classroom instruction might emphasize the development of these skills. Eventually, these become the competitive advantage and employability capitals of future graduates. Administering the licensure examination and the release of its results can be done within the first three months after graduation to lessen the cost of waiting. (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)

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)

Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, (...) and biometric data sensors Population biobanks, cohort studies, and genome databases Clinical and public health data Direct-to-consumer genetic testing Social media Fitness trackers, health apps, and biometric data sensors Ethical, legal, and social challenges of such collections are well recognized, but there has been limited attention to the broader societal implications of the existence of these collections. Although health research conducted using these collections is broadly recognized as beneficent, secondary uses of these data and samples may be controversial. We examine both documented and hypothetical scenarios of secondary uses of health data and samples. In particular, we focus on the use of health data for purposes of: Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Forensic investigations Civil lawsuits Identification of victims of mass casualty events Denial of entry for border security and immigration Making health resource rationing decisions Facilitating human rights abuses in autocratic regimes Current safeguards relating to the use of health data and samples include research ethics oversight and privacy laws. These safeguards have a strong focus on informed consent and anonymization, which are aimed at the protection of the individual research subject. They are not intended to address broader societal implications of health data and sample collections. As such, existing arrangements are insufficient to protect against subversion of health databases for non-sanctioned secondary uses, or to provide guidance for reasonable but controversial secondary uses. We are concerned that existing debate in the scholarly literature and beyond has not sufficiently recognized the secondary data uses we outline in this paper. Our main purpose, therefore, is to raise awareness of the potential for unforeseen and unintended consequences, in particular negative consequences, of the increased availability and development of health data collections for research, by providing a comprehensive review of documented and hypothetical non-health research uses of such 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)

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)

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)

COVID-19 has affected millions of people around the globe. People's mental health, especially those of nurses, has been primarily affected by the fear of this virus. More focus has been paid to vaccination and treatment of the virus, but less attestation has been given to addressing the mental health of people affected by the virus. Empirical studies show that different external factors are not easily manageable and controllable by the individual. This study preliminarily explores the connection between fear of COVID-19 (...) and secondary traumatic stress in nurses. Further, it examines the moderating effects of occupational self-efficacy on the relationship between fear of COVID-19 and secondary traumatic stress. Data for the study was collected from the nurses of six large hospitals in Karachi, Pakistan. The final analysis was performed on 243 samples. Studies on COVID-19 suggest that increased occupational self-efficacy decreases fear and its impact. This study offers insights for managers to develop stress management programs and provide proper training and counseling sessions to the nurses to motivate them emotionally. Theoretically, this study broadens the understanding of the theory of emotions by using the pandemic as a stressor. Future studies may explore different roles of occupational self-efficacy and study its influential role in managing different kinds of emotions explained by the theory of emotions. Managers at the workplace could design different self-efficacy training for nurses to increase their self-motivation to fight different types of stress they face at the workplace. (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)

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)

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.

International large-scale assessments, such as PISA, provide structured and static data. However, due to its extensive databases, several researchers place it as a reference in Big Data in Education. With the goal of exploring which factors at country, school and student level have a higher relevance in predicting student performance, this paper proposes an Educational Data Mining approach to detect and analyze factors linked to academic performance. To this end, we conducted a secondary data analysis (...) and built decision trees (C4.5 algorithm) to obtain a predictive model of school performance. Specifically, we selected as predictor variables a set of socioeconomic, process and outcome variables from PISA 2018 and other sources (World Bank, 2020). Since the unit of analysis were schools from all the countries included in PISA 2018 (n= 21,903), student and teacher predictor variables were imputed to the school database. Based on the available student performance scores in Reading, Math, and Science, we applied k-means clustering to obtain a categorized (three categories) target variable of global school performance. Results show the existence of two main branches in the decision tree, split according to the schools’ mean socioeconomic status (SES). While performance in high-SES schools is influenced by educational factors such as metacognitive strategies or achievement motivation, performance in low-SES schools is affected in greater measure by country-level socioeconomic indicators such as GDP, and individual educational indicators are relegated to a secondary level. Since these evidences are in line and delve into previous research, this work concludes by analyzing its potential contribution to support the decision making processes regarding educational policies. (shrink)

Population biobanks are an increasingly important infrastructure to support research and will be a much-needed resource in the delivery of personalised medicine. Artificial intelligence (AI) systems can process and cross-link very large amounts of data quickly and be used not only for improving research power but also for helping with complex diagnosis and prediction of diseases based on health profiles. AI, therefore, potentially has a critical role to play in personalised medicine, and biobanks can provide a lot of the (...) necessary baseline data related to healthy populations that will enable the development of AI tools. To develop these tools, access to personal data, and in particular, sensitive data, is required. Such data could be accessed from biobanks. Biobanks are a valuable resource for research but accessing and using the data contained within such biobanks raise a host of legal, ethical, and social issues (ELSI). This includes the appropriate consent to manage the collection, storage, use, and sharing of samples and data, and appropriate governance models that provide oversight of secondary use of samples and data. Biobanks have developed new consent models and governance tools to enable access that address some of these ELSI-related issues. In this paper, we consider whether such governance frameworks can enable access to biobank data to develop AI. As Italy has one of the most restrictive regulatory frameworks on the use of genetic data in Europe, we examine the regulatory framework in Italy. We also look at the proposed changes under the European Health Data Space (EHDS). We conclude by arguing that currently, regulatory frameworks are misaligned and unless addressed, accessing data within Italian biobanks to train AI will be severely limited. (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 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)