KEY POINTS In Canada, commercial data brokers collect deidentified patient data from pharmacies, private drug insurers, the federal government and medical clinics without patient consent. Although pharmaceutical companies are the data brokers’ primary customers, academics and nonprofit and public entities also use commercial data sets, given the absence of a coordinated public approach to collecting these data across Canada. Risks of commercialized patient data include loss of anonymity, surveillance and marketing, discrimination and violation of (...) Indigenous data sovereignty. Coordinated infrastructure for the collection and coordination of health data across Canada and updated privacy legislation would protect individuals and communities and enable appropriate data uses. (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)

Fixing the problem won’t be easy, but humans’ sharpened focus on an emerging philosophy of data might give us some clue about where we will be heading for.

For the last ten years, within molecular life sciences, the reproducibility crisis discourse has been embodied as a crisis of trust in scientific images. Beyond the contentious perception of “questionable research practices” associated with a digital turn in the production of images, this paper highlights the transformations of gel electrophoresis as a family of experimental techniques. Our aim is to analyze the evolving epistemic status of generated images and its connection with a crisis of trust in images within that field.From (...) the 1980s to the 2000s, we identify two key innovations (precast gels and gel docs) leading to a “two‐tiered” gel electrophoresis with different standardization procedures, different epistemic statuses of the produced images and different ways of generating (dis)trust in images. The first tier, exemplified by differential gel electrophoresis (DIGE), is characterized by specialized devices processing images as quantitative data. The second tier, exemplified by polyacrylamide gel electrophoresis (PAGE), is described as a routine technique making use of image as qualitative “virtual witnessing.” The difference between these two tiers is particularly apparent in the ways images are processed, even though both tiers involve image digitization. Our account thus highlights different views on reproducibility within the two tiers. Comparability of images is insisted upon in the first tier while traceability is expected in the second tier. It is striking that these differences occur not only within the same scientific field, but even within the same family of experimental techniques. In the second tier, digitization entails distrust, whereas it implies a collective sentiment of trust in the first tier. (shrink)

The EDPS Ethics Advisory Group (EAG) has carried out its work against the backdrop of two significant social-political moments: a growing interest in ethical issues, both in the public and in the private spheres and the imminent entry into force of the General Data Protection Regulation (GDPR) in May 2018. For some, this may nourish a perception that the work of the EAG represents a challenge to data protection professionals, particularly to lawyers in the field, as well as (...) to companies struggling to adapt their processes and routines to the requirements of the GDPR. What is the purpose of a report on digital ethics, if the GDPR already provides all regulatory requirements to protect European citizens with regard to the processing of their personal data? Does the existence of this EAG mean that a new normative ethics of data protection will be expected to fill regulatory gaps in data protection law with more flexible, and thus less easily enforceable ethical rules? Does the work of the EAG signal a weakening of the foundation of legal doctrine, such as the rule of law, the theory of justice, or the fundamental values supporting human rights, and a strengthening of a more cultural approach to data protection? Not at all. The reflections of the EAG contained in this report are not intended as the continuation of policy by other means. It neither supersedes nor supplements the law or the work of legal practitioners. Its aims and means are different. On the one hand, the report seeks to map and analyse current and future paradigm shifts which are characterised by a general shift from analogue experience of human life to a digital one. On the other hand, and in light of this shift, it seeks to re-evaluate our understanding of the fundamental values most crucial to the well-being of people, those taken for granted in a data-driven society and those most at risk. The objective of this report is thus not to generate definitive answers, nor to articulate new norms for present and future digital societies but to identify and describe the most crucial questions for the urgent conversation to come. This requires a conversation between legislators and data protection experts, but also society at large - because the issues identified in this report concern us all, not only as citizens but also as individuals. They concern us in our daily lives, whether at home or at work and there isn’t a place we could travel to where they would cease to concern us as members of the human species. (shrink)

Objectives -/- Surveys in various countries suggest 17% to 80% of doctors prescribe ‘placebos’ in routine practice, but prevalence of placebo use in UK primary care is unknown. Methods -/- We administered a web-based questionnaire to a representative sample of UK general practitioners. Following surveys conducted in other countries we divided placebos into ‘pure’ and ‘impure’. ‘Impure’ placebos are interventions with clear efficacy for certain conditions but are prescribed for ailments where their efficacy is unknown, such as antibiotics for suspected (...) viral infections. ‘Pure’ placebos are interventions such as sugar pills or saline injections without direct pharmacologically active ingredients for the condition being treated. We initiated the survey in April 2012. Two reminders were sent and electronic data collection closed after 4 weeks. Results -/- We surveyed 1715 general practitioners and 783 (46%) completed our questionnaire. Our respondents were similar to those of all registered UK doctors suggesting our results are generalizable. 12% (95% CI 10 to 15) of respondents used pure placebos while 97% (95% CI 96 to 98) used impure placebos at least once in their career. 1% of respondents used pure placebos, and 77% (95% CI 74 to 79) used impure placebos at least once per week. Most (66% for pure, 84% for impure) respondents stated placebos were ethical in some circumstances. Conclusion and implications -/- Placebo use is common in primary care but questions remain about their benefits, harms, costs, and whether they can be delivered ethically. Further research is required to investigate ethically acceptable and cost-effective placebo interventions. (shrink)

The COVID-19 Pandemic has undoubtedly affected learners, and as such, adjustments need to be made for successful teaching and learning through online learning. However, in Ghana, the effects of the COVID-19 Pandemic did not spare adult learners who are compelled by educational reforms to upgrade themselves academically using online learning platforms. Using a descriptive design, the study explored the perceptions and experiences of 166 (online data collection) adult learners as they pursue their academic programs through online learning. An adapted (...) questionnaire on perceptions and online learning experiences developed by Khan, Nabi, Khojah, and Tahir (2021) was used for the data collection. The Confirmatory Factor Analysis technique was used to analyse the data. The study revealed that respondents felt confident while using online learning content but refuted that those technologies permit them to take tests and submit assignments electronically. Furthermore, the study revealed that online learning service was making the learning process very simplified. The revelation means that adult learners possess positive experiences and perceptions about online learning. Therefore, online teaching and learning in higher education institutions should be made a routine activity in Ghana even after the COVID-19 Pandemic because the world is approaching a technological world. (shrink)

The main aim of the study was to determine the levels of Adversity Quotient and problem solving skills in Mathematics of BISU - MC students taking BSEdMathematics in the school year 2021-2022. It sought to find if there was a significant difference in the respondents’ levels of AQ and problem solving skills in Mathematics across their age, gender and year level as well as their level of AQ as a significant predictor of their level of problem solving skills in Mathematics. (...) It also aimed to develop a plan of action that would be proposed to improve these two aspects of their being. The total number of actual respondents was 163. Purposive sampling was used. The study utilized the quantitative type of study. It made use of the descriptive design to describe the characteristics of the population being studied and the regression design to infer the relationship between the independent variable and dependent variable. The Online AQ Profile was used for determining the respondents’ level of AQ and a 10-item test was used for determining their level of problem solving skills in Mathematics. Both inquired their profile. The data provided by the respondents were collected and subjected to statistical treatment through IBM SPSS Statistics Trial software. Data revealed that the age of the respondents ranged from 18 to 22 years old. Females numerically dominated the analyzed field. Majority of the respondents were from the first and fourth year levels. Their AQ was below average while their problem solving skills in Mathematics was satisfactory. The age, gender and year level of students did not matter in identifying their level of AQ. On the other hand, the older students had a higher level of problem solving skills in Mathematics than the younger ones and the students in the higher year level had a higher level of problem solving skills in Mathematics than those in the lower year level. Finally, their level of AQ gave a positive influence on their level of problem solving skills in Mathematics. The education system should be aligned with the profile of the students. The teachers would let the students read the book of Paul G. Stoltz, PhD titled “Adversity Quotient: Turning Obstacles into Opportunities”. The students would also reflect on the word of God. Also, the teachers would let the students study the book by George Polya titled “How To Solve It”. The students would also continue to solve various routine problems. Regardless of age, gender and year level, the family and friends of the students should encourage them in every way they can for their better future as they overcome their adversities. Mathematics curriculum makers and teachers work together to improvise teaching and learning Mathematics specifically problem solving for the younger students and those in the lower year level. Future researchers could replicate the study to further verify the results. Research could focus specifically on the CORE dimensions of AQ predicting the level of problem solving skills in Mathematics. (shrink)

The potential to collect brain data more directly, with higher resolution, and in greater amounts has heightened worries about mental and brain privacy. In order to manage the risks to individuals posed by these privacy challenges, some have suggested codifying new privacy rights, including a right to “mental privacy.” In this paper, we consider these arguments and conclude that while neurotechnologies do raise significant privacy concerns, such concerns are—at least for now—no different from those raised by other well-understood (...) class='Hi'>data collection technologies, such as gene sequencing tools and online surveillance. To better understand the privacy stakes of brain data, we suggest the use of a conceptual framework from information ethics, Helen Nissenbaum’s “contextual integrity” theory. To illustrate the importance of context, we examine neurotechnologies and the information flows they produce in three familiar contexts—healthcare and medical research, criminal justice, and consumer marketing. We argue that by emphasizing what is distinct about brain privacy issues, rather than what they share with other data privacy concerns, risks weakening broader efforts to enact more robust privacy law and policy. (shrink)

This literature review explores the issues and risks in non-conscious data collection and evaluates people’s attitudes towards it. In the modern world, data is one of the most valuable resources, yet studies focused on the potential negative implications of the new data-driven technologies are lacking. Therefore, this thesis conducts a comprehensive literature review to identify and assess risks in non-conscious data collection technologies that are most relevant and referenced in current literature. Accordingly, the most prominent risks (...) are related to privacy issues with personal data, bias in algorithms creating inequality, and the difficulties in creating adequate legislation. Subsequently, the thesis will explore existing studies about people’s attitudes towards non-conscious data collection and examine the most significant socio-demographic determinants of those attitudes. Therefore, despite socio-demographic factors such as age, gender, and economic status affecting the attitudes people have towards data collection technologies, this thesis argues how these approaches can be explained by varying external factors such as prior experiences with similar technologies. (shrink)

Using speech act theory from the Philosophy of Language, this paper attempts to develop an ethical framework for the phenomenon of speech processing. We use the concepts of the illocutionary force and the illocutionary content of a speech act to explain the ethics of speech processing. By emphasizing the different stages involved in speech processing, we explore the distinct ethical issues that arise in relation to each stage. Input, processing, and output are the different ethically relevant stages under which a (...) spoken item or a speech navigates within the range of speech-processing modules. Employing the illocutionary force-content distinction, we specify and characterize the input-related ethical issues, the output-related ethical issues, and the processing-related ethical issues involved in speech processing. Together with illocutionary force-content distinction, we employ the data-information distinction to characterize the stage-wise ethical issues in the phenomenon of speech processing as the ethics of collecting (speech) data, the ethics of contextualizing (speech) data/information, and the ethics of releasing the con-textualized information (processed speech). Immediate ethical issues that arise from the range of speech processing modules are distinguished from distant ethical issues. We also indicate the nature of ethical issues that arise from Speaker Independent speech technologies. (shrink)

ICTs, personal data, digital rights, the GDPR, data privacy, online security… these terms, and the concepts behind them, are increasingly common in our lives. Some of us may be familiar with them, but others are less aware of the growing role of ICTs and data in our lives - and the potential risks this creates. These risks are even more pronounced for vulnerable groups in society. People can be vulnerable in different, often overlapping, ways, which place them (...) at a disadvantage to the majority of citizens; Table 3 in this guide presents some of the many forms and causes of vulnerability. As a result, vulnerable people need greater support to navigate the digital world, and to ensure that they are able to exercise their rights. This guide explains where such support can be found, and also answers the following questions: - What are the main ethical and legal issues around ICTs for vulnerable citizens? - Who is vulnerable in Europe? - How do issues around ICTs affect vulnerable people in particular? This guide is a resource for members of vulnerable groups, people who work with vulnerable groups, and citizens more broadly. It is also useful for data controllers1 who collect data about vulnerable citizens. While focused on citizens in Europe, it may be of interest to people in other parts of the world. It forms part of the Citizens’ Information Pack produced by the PANELFIT project, and is available in English, French, German, Italian and Spanish. You are welcome to translate this guide into other languages. Please send us a link to online versions in other languages, so that we can add them to the project website. (shrink)

Bulk collection involves the mining of large data sets containing personal data, often for a security purpose. In 2013, Edward Snowden exposed large scale bulk collection on the part of the US National Security Agency as part of a secret counter-terrorism effort. This effort has mainly been criticised for its invasion of privacy. I argue that the right moral argument against it is not so much to do with intrusion, as ineffectiveness for its official purpose and the lack (...) of oversight by security cleared legislators. It also lends itself to government "domination" (in Pettit's sense) of those who are subject to it. (shrink)

Data subject rights provide data controllers with obligations that can help with transparency, giving data subjects some control over their personal data. To date, a growing number of researchers have used these data subject rights as a methodology for data collection in research studies. No one, however, has gathered and analysed different academic research studies that use data subject rights as a methodology for data collection. To this end, we conducted a systematic (...) literature review that searched, compiled, and analysed 32 academic studies that use data subject rights as a data collection method. We find that the right of access is the most commonly-used data subject right by researchers, most studies are interested in measuring data subject rights compliance, and that a variety of difficulties exist in conducting research studies with data subject rights. We conclude that researchers should explore other data subject rights for alternative purposes, ease the process of exercising data subject rights, and improve the scalability of these studies. (shrink)

“Big Data” and data analytics affect all of us. Data collection, analysis, and use on a large scale is an important and growing part of commerce, governance, communication, law enforcement, security, finance, medicine, and research. And the theme of this symposium, “Individual and Informational Privacy in the Age of Big Data,” is expansive; we could have long and fruitful discussions about practices, laws, and concerns in any of these domains. But a big part of the audience (...) for this symposium is students and faculty in higher education institutions (HEIs), and the subject of this paper is data analytics in our own backyards. Higher education learning analytics (LA) is something that most of us involved in this symposium are familiar with. Students have encountered LA in their courses, in their interactions with their law school or with their undergraduate institutions, instructors use systems that collect information about their students, and administrators use information to help understand and steer their institutions. More importantly, though, data analytics in higher education is something that those of us participating in the symposium can actually control. Students can put pressure on administrators, and faculty often participate in university governance. Moreover, the systems in place in HEIs are more easily comprehensible to many of us because we work with them on a day-to-day basis. Students use systems as part of their course work, in their residences, in their libraries, and elsewhere. Faculty deploy course management systems (CMS) such as Desire2Learn, Moodle, Blackboard, and Canvas to structure their courses, and administrators use information gleaned from analytics systems to make operational decisions. If we (the participants in the symposium) indeed care about Individual and Informational Privacy in the Age of Big Data, the topic of this paper is a pretty good place to hone our thinking and put into practice our ideas. (shrink)

This paper presents an ethical framework designed to support the development of critical data literacy for research methods courses and data training programmes in higher education. The framework we present draws upon our reviews of literature, course syllabi and existing frameworks on data ethics. For this research we reviewed 250 research methods syllabi from across the disciplines, as well as 80 syllabi from data science programmes to understand how or if data ethics was taught. We (...) also reviewed 12 data ethics frameworks drawn from different sectors. Finally, we reviewed an extensive and diverse body of literature about data practices, research ethics, data ethics and critical data literacy, in order to develop a transversal model that can be adopted across higher education. To promote and support ethical approaches to the collection and use of data, ethics training must go beyond securing informed consent to enable a critical understanding of the techno-centric environment and the intersecting hierarchies of power embedded in technology and data. By fostering ethics as a method, educators can enable research that protects vulnerable groups and empower communities. (shrink)

Technological advances are bringing new light to privacy issues and changing the reasons for why privacy is important. These advances have changed not only the kind of personal data that is available to be collected, but also how that personal data can be used by those who have access to it. We are particularly concerned with how information about personal attributes inferred from collected data (such as online behaviour), can be used to tailor messages and (...) services to specific individuals or groups. This kind of ‘personalised targeting’ has the potential to influence individuals’ perceptions, attitudes, and choices in unprecedented ways. In this paper, we argue that because it is becoming easier for companies to use collected data for influence, threats to privacy are increasingly also threats to personal autonomy—an individual’s ability to reflect on and decide freely about their values, actions, and behaviour, and to act on those choices.4 While increasing attention is directed to the ethics of how personal data is collected, we make the case that a new ethics of privacy needs to also think more rigorously about how personal data may be used, and its potential impact on personal autonomy. (shrink)

Digitisation of research data is widely increasing all around the world because it needs more and development of enormous digital technologies. Data curation services are starting to offer many libraries. Research data curation is the collective invaluable and reusable information of the researchers. Collected data preservation is more important. The majority of the higher education institutes preserved the research data for their students and researchers. It is stored for a long time using various formats. (...) It is called research data preservation. Without proper research data management plan and implementation cannot curate the research data. The aim of the study is to identify the Asian Library and Information Science (LIS) faculties’ experiences in the research data preservation and curation during their research. Data management, curation and preservation all are interlinked. For reuse of the research data; data curation is an essential role. For this research, we adopted a survey method and an online questionnaire was shared with 1400 LIS professionals, belonging to the Asian region but the completed study respondents are 125 university faculties from various Asian countries. The study findings are 76.8 per cent generated statistical data followed by 58.4 per cent textual files. By far, the most preferable data analysis tool is Microsoft Excel 82.4 per cent. Moreover, the result shows that generated data is mostly stored by personal computers and laptop hard disks. This study concludes LIS faculties having adequate skills and knowledge on data curation and preservation even though they are expecting more services from their academic institute …. (shrink)

Previous research has extensively analysed teachers' and students' Facebook use for instructional engagement, writing, research dissemination and e-learning. However, Facebook as a data collection mechanism for research has scarcely been the subject of previous studies. The current study addressed these gaps by analysing students' awareness, willingness, and utilisation of Facebook for research data collection [RDC]. This study aimed to predict students’ Facebook use for research data collection based on their awareness and willingness and to determine age and (...) gender differences in such predictions. A sample of 11,562 students of tertiary institutions participated in an online survey. The researchers designed and validated the online survey. Exploratory Factor Analysis was used for dimensionality. Average Variance Extracted [AVE] was used for convergent validity, whilst the Fornel-Larcker criterion and Heterotrait-Monotrait ratio were used for discriminant validity. Composite reliability indices of .97, .94 and .90 proved the instrument’s three sub-scales usable. One sample t-test and multigroup analysis were conducted using SPSS 27 and Smart PLS 3. The study found high awareness but low usage of Facebook for RDC among Nigerian university students. Younger and male students showed higher willingness and actual use of Facebook for RDC. Awareness directly impacted by awareness, and acted as Facebook usage for RDC, with stronger impacts for males and students aged 19 to 28. Willingness was positively impacted and acted as a negative mediator between awareness and usage for some age groups and genders. These findings provide important insights into using Facebook for RDC among students in Nigerian universities and highlight the need to consider the impact of demographic factors such as age and. (shrink)

The existing body of knowledge has witnessed gaps arising from the paucity of research literature on the quality of educational research output in higher education. This study shows how the management of data in higher education affects the quality of academic research conducted by university lecturers in South-South Nigeria. A sample of 602 lecturers were accessed during data collection and responded to two questionnaires (Data Management Practices Questionnaire – DMPQ and "Educational Research Effectiveness Questionnaire – EREQ). Multiple (...) regression was employed in the analysis of data. Findings revealed amongst others that; data storage, data security, data retrieval, data sharing, and data re-use jointly contributed to the total variance in educational research effectiveness of university lecturers in terms of proper citations by 56.25%, problem-solving by 22.14%, knowledge creation by 34.50%, and generation of testable data by 36.88%. The five data management practices compositely influences the educational research effectiveness of university lecturers in terms of proper citations (F=152.25,p<.05), problem-solving (F=33.90,p<.05), knowledge creation (F=62.78,p<.05), and the generation of testable data (F=69.65,p<.05), is statistically significant. Based on the findings of this study, it was concluded that data management practices (storage, security, retrieval, sharing, and re-use) jointly and relatively contributes to the total variance in educational research effectiveness in terms of proper citations, problem-solving, knowledge creation and generation of testable data at varying extents. It was recommended, among others that, lecturers should practice the habit of managing research data in their personal computers and through manual channels. These records could become vital in the future for further problem-solving. (shrink)

There is increasing concern about “surveillance capitalism,” whereby for-profit companies generate value from data, while individuals are unable to resist (Zuboff 2019). Non-profits using data-enabled surveillance receive less attention. Higher education institutions (HEIs) have embraced data analytics, but the wide latitude that private, profit-oriented enterprises have to collect data is inappropriate. HEIs have a fiduciary relationship to students, not a narrowly transactional one (see Jones et al, forthcoming). They are responsible for facets of student life beyond (...) education. In addition to classrooms, learning management systems, and libraries, HEIs manage dormitories, gyms, dining halls, health facilities, career advising, police departments, and student employment. HEIs collect and use student data in all of these domains, ostensibly to understand learner behaviors and contexts, improve learning outcomes, and increase institutional efficiency through “learning analytics” (LA). ID card swipes and Wi-Fi log-ins can track student location, class attendance, use of campus facilities, eating habits, and friend groups. Course management systems capture how students interact with readings, video lectures, and discussion boards. Application materials provide demographic information. These data are used to identify students needing support, predict enrollment demands, and target recruiting efforts. These are laudable aims. However, current LA practices may be inconsistent with HEIs’ fiduciary responsibilities. HEIs often justify LA as advancing student interests, but some projects advance primarily organizational welfare and institutional interests. Moreover, LA advances a narrow conception of student interests while discounting privacy and autonomy. Students are generally unaware of the information collected, do not provide meaningful consent, and express discomfort and resigned acceptance about HEI data practices, especially for non-academic data (see Jones et al. forthcoming). The breadth and depth of student information available, combined with their fiduciary responsibility, create a duty that HEIs exercise substantial restraint and rigorous evaluation in data collection and use. (shrink)

Ontological realism aims at the development of high quality ontologies that faithfully represent what is general in reality and to use these ontologies to render heterogeneous data collections comparable. To achieve this second goal for clinical research datasets presupposes not merely (1) that the requisite ontologies already exist, but also (2) that the datasets in question are faithful to reality in the dual sense that (a) they denote only particulars and relationships between particulars that do in fact exist and (...) (b) they do this in terms of the types and type-level relationships described in these ontologies. While much attention has been devoted to (1), work on (2), which is the topic of this paper, is comparatively rare. Using Referent Tracking as basis, we describe a technical data wrangling strategy which consists in creating for each dataset a template that, when applied to each particular record in the dataset, leads to the generation of a collection of Referent Tracking Tuples (RTT) built out of unique identifiers for the entities described by means of the data items in the record. The proposed strategy is based on (i) the distinction between data and what data are about, and (ii) the explicit descriptions of portions of reality which RTTs provide and which range not only over the particulars described by data items in a dataset, but also over these data items themselves. This last feature allows us to describe particulars that are only implicitly referred to by the dataset; to provide information about correspondences between data items in a dataset; and to assert which data items are unjustifiably or redundantly present in or absent from the dataset. The approach has been tested on a dataset collected from patients seeking treatment for orofacial pain at two German universities and made available for the NIDCR-funded OPMQoL project. (shrink)

Biodiversity science is in a pivotal period when diverse groups of actors—including researchers, businesses, national governments, and Indigenous Peoples—are negotiating wide-ranging norms for governing and managing biodiversity data in digital repositories. These repositories, often called biodiversity data portals, are a type of organization for which governance can address or perpetuate the colonial history of biodiversity science and current inequities. Researchers and Indigenous Peoples are developing and implementing new strategies to examine and change assumptions about which agents should count (...) as salient participants in scientific projects, especially in projects that build and manage large digital data portals. Two notable efforts are the FAIR (Findable, Accessible, Interoperable, Reusable) and CARE (Collective benefit, Authority, Responsibility, Ethics) Principles for scientific data management and governance. To characterize how these principles influence the governance of biodiversity data portals, we develop an account of fit-for-use data that makes explicit its social as well as technical conditions in relation to agents and purposes. The FAIR Principles, already widely adopted by biodiversity researchers, prioritize machine agents and efficient computation, while the CARE Principles prioritize Indigenous Peoples and their data sovereignty. Both illustrate the potency of an emerging general strategy by which groups of actors craft and implement governance principles for data fitness-of-use to change assumptions about who are salient participants in data science. (shrink)

The ability to collect fine-grained energy data from smart meters has benefits for utilities and consumers. However, a proactive approach to data privacy is necessary to maximize the potential of these data to support low-carbon energy systems, and innovative business models.

The first few years of the 21st century were characterised by a progressive loss of privacy. Two phenomena converged to give rise to the data economy: the realisation that data trails from users interacting with technology could be used to develop personalised advertising, and a concern for security that led authorities to use such personal data for the purposes of intelligence and policing. In contrast to the early days of the data economy and internet surveillance, the (...) last few years have witnessed a rising concern for privacy. As bad data practices have come to light, citizens are starting to understand the real cost of using online digital technologies. Two events stamped 2018 as a landmark year for privacy: the Cambridge Analytica scandal, and the implementation of the European Union’s General Data Protection Regulation (GDPR). The former showed the extent to which personal data has been shared without data subjects’ knowledge and consent and many times for unacceptable purposes, such as swaying elections. The latter inaugurated the beginning of robust data protection regulation in the digital age. Getting privacy right is one of the biggest challenges of this new decade of the 21st century. The past year has shown that there is still much work to be done on privacy to tame the darkest aspects of the data economy. As data scandals continue to emerge, questions abound as to how to interpret and enforce regulation, how to design new and better laws, how to complement regulation with better ethics, and how to find technical solutions to data problems. The aim of the research project Data, Privacy, and the Individual is to contribute to a better understanding of the ethics of privacy and of differential privacy. The outcomes of the project are seven research papers on privacy, a survey, and this final report, which summarises each research paper, and goes on to offer a set of reflections and recommendations to implement best practices regarding privacy. (shrink)

As the world grapples with the urgent need for sustainable development, the transition towards green energy stands as a critical imperative. Financing this transition poses significant challenges, requiring innovative approaches that align financial objectives with environmental sustainability goals. This review presents a conceptual framework for leveraging data-driven techniques in sustainable finance to facilitate the transition towards green energy. The proposed framework integrates principles of sustainable finance with advanced data analytics to enhance decision-making processes across the financial ecosystem. At (...) its core, the framework emphasizes the importance of harnessing vast datasets related to energy production, consumption, environmental impact, and financial performance. By leveraging machine learning algorithms and predictive modeling techniques, financial stakeholders can gain deeper insights into the risks and opportunities associated with green energy investments. Key components of the framework include data collection and aggregation, risk assessment, impact measurement, and investment optimization. Data sources range from traditional financial indicators to environmental metrics, social impact assessments, and geopolitical factors. Through comprehensive data analysis, financial institutions can assess the long-term viability and sustainability of green energy projects, while also evaluating potential social and environmental impacts. Risk assessment methodologies within the framework consider both financial risks, such as market volatility and regulatory uncertainty, and non-financial risks, such as climate change impacts and community resilience. By integrating these factors into risk models, investors can make more informed decisions that mitigate potential losses and maximize returns. Furthermore, impact measurement tools enable stakeholders to quantify the environmental and social benefits of green energy investments. By tracking metrics such as carbon emissions reduction, energy efficiency improvements, and job creation, investors can assess the contribution of their portfolios towards broader sustainability objectives. Finally, the framework incorporates investment optimization strategies that align financial goals with environmental objectives. Through portfolio diversification, asset allocation, and innovative financial instruments such as green bonds and impact investing funds, financial institutions can allocate capital more efficiently towards green energy projects. The conceptual framework presented herein offers a systematic approach to integrating data-driven methodologies into sustainable finance practices. By leveraging advanced analytics and comprehensive datasets, financial stakeholders can drive the transition towards green energy while simultaneously achieving financial returns and positive environmental outcomes. (shrink)

Big Data must be processed with advanced collection and analysis tools, based on predetermined algorithms, in order to obtain relevant information. Algorithms must also take into account invisible aspects for direct perceptions. Big Data issues is multi-layered. A distributed parallel architecture distributes data on multiple servers (parallel execution environments) thus dramatically improving data processing speeds. Big Data provides an infrastructure that allows for highlighting uncertainties, performance, and availability of components. DOI: 10.13140/RG.2.2.12784.00004 .

Access to data in crime and place research has traditionally been reserved for those who have the means to collect fresh data themselves, pay for access, or obtain data through formal data sharing agreements. Even when access is granted, the usage of these data often comes with conditions that circumscribe how the data can be used through licensing or policy (Kitchin, 2014). Even the public dissemination of findings which emerge from analysis might be subject (...) to restrictions. This can lead to unequal access, controlled usage and curb the diffusion of findings, severely limiting the insight that can be obtained from data. (shrink)

What is the epistemological status of Big Data? Is there really place for them in a scientific search for new empirical laws?

The concept of an individual, liberal data subject, who was traditionally at the centre of data protection efforts has recently come under scrutiny. At the same time, the particularly destructive effect of digital technology on Black people establishes the need for an analysis that not only considers but brings racial dimensions to the forefront. I argue that because Afrofuturism situates the Black struggle in persistent, yet continuously changing structural disparities and power relations, it offers a powerful departure point (...) for re-imagining data protection. Sketching an Afrofuturist data subject then centres on radical subjectivity, collectivity, and contextuality. (shrink)

In this paper, we analyse the relation between the use of environmental data in contemporary health sciences and related conceptualisations and operationalisations of the notion of environment. We consider three case studies that exemplify a different selection of environmental data and mode of data integration in data-intensive epidemiology. We argue that the diversification of data sources, their increase in scale and scope, and the application of novel analytic tools have brought about three significant conceptual shifts. (...) First, we discuss the EXPOsOMICS project, an attempt to integrate genomic and environmental data which suggests a reframing of the boundaries between external and internal environments. Second, we explore the MEDMI platform, whose efforts to combine health, environmental and climate data instantiate a reframing and expansion of environmental exposure. Third, we illustrate how extracting epidemiological insights from extensive social data collected by the CIDACS institute yields innovative attributions of causal power to environmental factors. Identifying these shifts highlights the benefits and opportunities of new environmental data, as well as the challenges that such tools bring to understanding and fostering health. It also emphasises the constraints that data selection and accessibility pose to scientific imagination, including how researchers frame key concepts in health-related research. (shrink)

This paper describes the scientific practices of the anatomists from the Société Anatomique de Paris (1803–1873) who were collecting anatomical and pathological specimens in Nineteenth-Century Paris and which led to the building of the anatomy and pathology Musée Dupuytren (1835–2016). The framework introduced by Robert Kohler to describe collecting sciences (2007) is useful as a tool to identify the set of diverse practices within pathological anatomy in nineteenth-century Paris. However, I will argue that anatomy and pathology collecting had specific features (...) compared to most collecting sciences. Two main collecting practices could be distinguished: first, “finding” anatomical specimens and second, keeping these specimens. The first kind of practices were at least rhetorically and explicitly motivated by Auguste Comte’s positive philosophy. But “finding” an anatomy or pathology specimen could not be completely compared to finding an object or making a simple observation, as dissecting as well as some experimental practices were also involved. Heterogeneous practices thus coexisted within collecting in anatomy and pathology. Epistemological as well as pragmatic tensions arose. On top of Kohler’s framework, I introduce Sabina Leonelli’s concept of “data journey” to offer a narrative of the diversity of collecting practices involved in the Société Anatomique de Paris and the Musée Dupuytren. I use the concept to analyse how this diversity of practices impacted knowledge production. (shrink)

The present study collected a larger set of three-dimensional data on human crania from the Kofun period (as well as from previous periods, i.e., the Jomon and Yayoi periods) in the Japanese archipelago (AD 250 to around 700) than previous studies. Three-dimensional geometric morphometrics were employed to investigate human migration patterns in finer-grained phases. These results are consistent with those of previous studies, although some new patterns were discovered. These patterns were interpreted in terms of demic diffusion, archaeological (...) findings, and historical evidence. In particular, the present results suggest the presence of a gradual geological cline throughout the Kofun period, although the middle period did not display such a cline. This discrepancy might reflect social changes in the middle Kofun period, such as the construction of keyhole-shaped mounds in the peripheral regions. The present study implies that a broader investigation with a larger sample of human crania is essential to elucidating macro-level cultural evolutionary processes. (shrink)

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

Qualitative fieldwork research on sensitive topics sometimes requires that interviewees be granted confidentiality and anonymity. When qualitative researchers later publish their findings, they must ensure that any statements obtained during fieldwork interviews cannot be traced back to the interviewees. Given these protections to interviewees, the integrity of the published findings cannot usually be verified or replicated by third parties, and the scholarly community must trust the word of qualitative researchers when they publish their results. This trust is fundamentally abused, however, (...) when researchers publish articles reporting qualitative fieldwork data that they never collected. Using only publicly available information, I argue that a 2017 article in an Elsevier foreign policy and international relations journal presents anonymised fieldwork interviews that could not have occurred as described. As an exercise in post-publication peer review (PPPR), this paper examines the evidence that calls into question the reliability of the putative fieldwork quotations. I show further that the 2017 article is not a unique case. The anonymity and confidentiality protections common in some areas of research create an ethical problem: the protections necessary for obtaining research data can be used as a cover to hide substandard research practices as well as research misconduct. (shrink)

The background to this paper is that in our world of massively increasing personal digital data any control over the data about me seems illusionary – informational privacy seems a lost cause. On the other hand, the production of this digital data seems a necessary component of our present life in the industrialized world. A framework for a resolution of this apparent dilemma is provided if by the distinction between (meaningless) data and (meaningful) information. I argue (...) that computational data processing is necessary for many present-day processes and not a breach of privacy, while collection and processing of private information is often not necessary and a breach of privacy. The problem and the sketch of its solution are illustrated in a case-study: supermarket customer cards. (shrink)

The dishonest practices in the conduct of educational research in South-South region particularly, and Nigeria generally, has called for urgent intervention. This study assessed data management practices and educational research effectiveness of University Lecturers in South-South Nigeria. A sample of 602 lecturers that were accessible during data collection responded to two questionnaires (Data Management Practices Questionnaire – DMPQ and "Educational Research Effectiveness Questionnaire – EREQ). Multiple regression was employed in the analysis of data. Findings revealed amongst (...) others that; data storage, data security, data retrieval, data sharing, and data re-use jointly contributed to the total variance in educational research effectiveness in terms of proper citations by 56.25%, problem-solving by 22.14%, knowledge creation by 34.50%, and generation of testable data by 36.88%; and their composite influence on educational research effectiveness in terms of proper citations (F=152.25,p<.05), problem-solving (F=33.90,p<.05), knowledge creation (F=62.78,p<.05), and generation of testable data (F=69.65,p<.05), is statistically significant. Based on the findings of this study, it was recommended among others that, there should be an up-to-date database or data warehouse in Ministries of Education where researchers can easily access data in order to increase the quality of researches by eliminating the problems of data fabrication and falsification. This study contributes to the existing body of knowledge by addressing the gaps arising from the paucity of research literature on educational research effectiveness. This study shows how data management practices affects the quality of educational research output of university lecturers using empirical evidence from Nigeria. (shrink)

Upward monotonic semantics for necessity modals give rise to Ross’s Puzzle: they predict that □φ entails □(φ ∨ ψ), but common intuitions about arguments of this form suggest they are invalid. It is widely assumed that the intuitive judgments involved in Ross’s Puzzle can be explained in terms of the licensing of ‘Diversity’ inferences: from □(φ ∨ ψ), interpreters infer that the truth of each disjunct (φ, ψ) is compatible with the relevant set of worlds. I introduce two pieces of (...) data that this analysis fails to explain. Analyzing this data, I argue, suggests that necessity modals with embedded disjunctions license ‘Independence’ inferences: from the truth of □(φ ∨ ψ), interpreters infer that φ-without-ψ and ψ-without-φ are each compatible with the relevant set of worlds. I outline a bilateral inquisitive semantics for necessity modals that predicts the validity of the Independence inferences. I then argue that the resulting theory should be understood as one on which disjunctions denote pluralities of propositions, and necessity modals behave like collective predicates applied to these pluralities. (shrink)

Historic preservation, which is a vital act for conveying people’s understanding of the past, such as events, ideas, and places to the future, allows people to preserve history for future generations. Additionally, since the historic properties are currently concentrated in urban areas, an urban-oriented approach will contribute to the issue. Hence, public awareness is a key factor that paves the way for this conservation. Public history, a history with a public audience and special methods of representation, can serve society in (...) this regard. Historical video games, which get their game objectives from the past, can be considered a form of public history, raising people’s awareness and letting them gain historical experience. While plenty of studies focused on this content with various approaches, this study takes the topic under consideration with a player-oriented focus. The research uses the Steam video game digital distribution service database to explore the existing historical games based on their genre, player scale, dimension, VR compatibility attributes, and player rating. The database includes 1,148 games published between 2002 and 2022, filtered as historical by Steam tags and sorted by player review. For the data collection, the study uses the Octoparse web scraping tool for data extraction, and for the data analysis, it uses RapidMiner Studio data mining software. The study aims to provide a framework applicable to the development of commercially playable historical video games contributing to heritage preservation by raising public awareness in the context of public history. (shrink)

Educational Data Mining (EDM) is a new paradigm aiming to mine and extract knowledge necessary to optimize the effectiveness of teaching process. With normal educational system work it’s often unlikely to accomplish fine system optimizing due to large amount of data being collected and tangled throughout the system. EDM resolves this problem by its capability to mine and explore these raw data and as a consequence of extracting knowledge. This paper describes several experiments on real educational (...) data wherein the effectiveness of Data Mining is explained in migration the educational data into knowledge. The experiments goal at first to identify important factors of teacher behaviors influencing student satisfaction. In addition to presenting experiences gained through the experiments, the paper aims to provide practical guidance of Data Mining solutions in a real application. (shrink)

In everyday language, we readily attribute experiences to groups. For example, 1 might say, “Spain celebrated winning the European Cup” or “The uncovering of corruption caused the union to think long and hard about its internal structure.” In each case, the attribution makes sense. However, it is quite difficult to give a nonreductive account of precisely what these statements mean because in each case a mental state is ascribed to a group, and it is not obvious that groups can have (...) mental states. In this article, I do not offer an explicit theory of collective experience. Instead, I draw on phenomenological analyses and empirical data in order to provide general conditions that a more specific theory of collective experience must meet in order to be coherent. (shrink)

The Internet of Things (IoT) wireless LAN in healthcare has moved away from traditional methods that include hospital visits and continuous monitoring. The Internet of Things allows the use of certain means, including the detection, processing and transmission of physical and biomedical parameters. With powerful algorithms and intelligent systems, it will be available to provide unprecedented levels of critical data for real-time life that are collected and analyzed to guide people in research, management and emergency care. This chapter (...) provides a quick overview of IoT features and how they relate to wireless discovery and technology to deploy the medical applications you need. In the world, the revolution in any industry is to connect your products and devices to the Internet and make them independent and remotely connected, so that anyone can use and view them from anywhere and anytime. The Internet of Things provides us with a home automation system that uses smart devices to overcome this obstacle, allowing us to easily manage our appliances. A smart city is a vision to integrate a variety of information and communication solutions for residents with essential services, such as smart parking on all streets. The main motivation for using the Internet for parking objects is simply collecting data to get free parking. The IoT-based RTSSPS architecture is divided into three parts: a WSN-based smart street parking module, an IoT-based smart street parking module, and an IoT-based smart street parking module. IoT-based cloud with street parking algorithm, rating and future directions. (shrink)

The purpose of this article is twofold: on the one hand, we present the outlines of a history of university collections in Germany. On the other hand, we discuss this history as a case study of the changing attitudes of the sciences towards their material heritage. Based on data from 1094 German university collections, we distinguish three periods that are by no means homogeneous but offer a helpful starting point for a discussion of the entangled institutional and epistemic factors (...) in the history of university collections. In the 19th century, university collections were institutionalized and widely recognized as indispensable in research and teaching. During the 20th century, university collection became increasingly marginalized both on an institutional and theoretical level. Towards the end of the 20th century, the situation of university collections improved partly because of their reconsideration as material heritage. (shrink)

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. (...) These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard. (shrink)

With the growth of data, data-intensive approaches for sustainability are becoming widespread and have been endorsed by various stakeholders. To understand their implications, in this paper data-intensive approaches for sustainability will be explored by conducting an extensive review. The current data-intensive approaches are defined as an amalgamation of traditional data-collection methods, like surveys and data from monitoring networks, with new data-collection methods that involve new information communication technology. Based on a comprehensive review of (...) the current dataintensive approaches for sustainability, key challenges are identified: the lack of data availability, diverse indicators developed from a narrowly viewed base, diverse definitions and values, skewed global representation, and the lack of social and economic information collected, especially among the business indicators. To clarify the implications of these trends, four major research assumptions regarding dataintensive approaches are elaborated: the methodology, epistemology, normativity, and ontology. Caution is required when data-intensive approaches are masked as “objective”. Overcoming this issue requires interdisciplinary and community-based approaches that can offer ways to address the subjectivities of data-intensive approaches. The current challenges to interdisciplinarity and community-based approaches are also identified, and possible solutions are explored, so that researchers can employ them to make the best use of data-intensive approaches. (shrink)

In this chapter I defend the construction of inclusive, tightly governed DNA databases, as long as police can access them only for the prosecution of the most serious crimes or less serious but very high-volume offences. I deny that that the ethics of collecting and using these data sets the pattern for other kinds of policing by big data, notably predictive policing. DNA databases are primarily used for matching newly gathered biometric data with stored data. After (...) considering and disputing a number of objections to this practice, I conclude that DNA databases used in this way are ethically acceptable, if not valuable, contributions to legitimate policing. (shrink)

All societies have to balance privacy claims with other moral concerns. However, while some concern for privacy appears to be a common feature of social life, the definition, extent and moral justifications for privacy differ widely. Are there better and worse ways of conceptualising, justifying, and managing privacy? These are the questions that lie in the background of this thesis. -/- My particular concern is with the ethical issues around privacy that are tied to the rise of new information and (...) communication technologies (henceforth “ICT”). The focus here is on technologies involved in processing personal data in its broadest sense, including “any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.” The issue of moral concern is commonly designated as that of 'data privacy'. -/- The first step is to consider why privacy matters, or ought to matter, in the first place. And here we run into our first difficulty, since both the conceptualisation of privacy and the justification for the right to privacy are matters for contention. On the one hand, we are animated by a moral concern for privacy in some sense; on the other, we lack the conceptual and moral resources for making sense of this concern or for promoting particular social policies and criticising others. This often-cited dichotomy and its ensuing confusion have been the central motivation for most of the philosophical literature on privacy – including this thesis. -/- In what follows, I will suggest a way out of the confusion that pervades the current debate on data privacy. I will essentially argue two claims: one, that the concept of (data) privacy is uniquely characterised by a particular context within which we exchange information; two, that because (data) privacy constitutes an intrinsic value, its moral concerns and justifications ought to be deliberated as such. -/- The first chapter sketches the current data privacy landscape by introducing a number of concepts and arguing the unique nature of the landscape. I argue that the traditional distinction between four kinds of privacy (physical, mental, decisional and informational) is no longer accurate, given the technological context that reduces, unifies and processes all aspects of people’s lives by means of digital data. In fact, to hold on to the distinction leads to a fundamental misconception of data privacy. I further argue that today’s distinction between data protection and data privacy runs the risk of ignoring the fact that the former is an inherent aspect of the latter. These arguments allow me to settle on a (provisional) definition of data privacy: controlling how data about identifiable people is processed by ICT. -/- Next, I draw a line between descriptive and normative accounts of data privacy, and explain why this book belongs to the latter category. After a brief discussion of the coherence and distinctiveness theses, and of the difference between instrumental and intrinsic theories of privacy, I introduce the problem of data privacy as a distinct, coherent, and intrinsic moral concern. Three arguments support this position: one, data privacy is a coherent moral concern because it is motivated by a singular moral concept; two, data privacy is a distinct moral concern because the privacy challenges we face today are of a fundamentally new nature – distinct from any moral concerns we’ve faced in the past; and three, data privacy is an intrinsic moral concern that is predominantly justified, not by what it instrumentally protects us from, but by what it intrinsically constitutes. -/- Chapter Two makes the case against a harm-based, consequentialist approach to data privacy. After a brief introduction to the basic tenets of consequentialism I discuss harm-based arguments in favour as well as against privacy. I explain how privacy may protect us against psychological distress, but at the same time constitute the source of that distress; how privacy may be necessary for the proper functioning of democratic societies, but at the same time provide a cloak for anti-social and immoral behaviour; and how privacy protects us against the improper use of our personal data by others, but at the same enables us to conceal information or spread false information about ourselves in ways that are harmful to others. Next, I argue that consequentialism essentially relies on two flawed presumptions – that we know what harm is, and that we know how to predict it – and discuss the controversies surrounding definitions and predictions of harm. This argument becomes especially pertinent in today’s rapidly changing technological context: we may guess, and make assumptions, perhaps even find correlations, but don’t really know or understand (yet) with any degree of certainty the harmful consequences today’s data privacy violations are causing or will eventually cause – if any. -/- I illustrate this with examples of recent data privacy violations, and with a brief overview of consequentialist arguments for and against data privacy. Those who invoke consequentialist arguments against data privacy claim that personal data is nothing more than a raw material that can be turned into something useful and valuable without harming anyone. Choosing to move fast and break things – a popular mantra that promotes the benefits of technological “permissionless innovation” over and above its risks and costs – they draw our attention to the many benefits free data flows generate. Those who rely on consequentialist arguments in favour of data privacy, on the other hand, insist on actual and potential misuse of personal data. Rather careful than sorry, they draw our attention to the urgent need to take back control and protect ourselves against data privacy violations – precisely because we don’t know which harm they may cause in the future. Others go one step further and argue that these violations are part of a broader ideology of power. -/- What Chapter Two demonstrates is that vague definitions, unreliable predictions and inconclusive allegations of harm from both sides of the debate perpetuate a stalemate that fails to produce morally defensible answers to our growing data privacy concerns. Deliberating about data privacy from a consequentialist perspective is a dead end. -/- Chapter Three proposes an alternative to the harm-based approach, namely that privacy is an intrinsic value that deserves moral protection for its own sake. After a brief account of what I take values to be, and why we have a need to protect them, I introduce the foundational value of respect for persons, and lay out my main argument in two steps. The conceptual component of my argument returns to the definition of data privacy I had temporarily settled on in Chapter One, but now with the added consideration of the particular context, and particular circumstances and attitudes, within which information is exchanged. This addition is crucial, as it reveals the fundamental value that is at stake in our data privacy concerns, namely the inherent value of each and every person, which we protect by upholding an ethical principle commonly known as the principle of respect for persons. It is for this reason that the violation of privacy cannot (only) be expressed in terms of harm. I further argue that the principle of respect for persons is consistent with, and in fact unthinkable without, some degree of privacy. -/- I reply to potential challenges to a value-based approach to data privacy by showing that (i) values and value trade-offs are fundamentally different from consequential benefits and cost-benefit analyses; (ii) the suspension of one value in favour of another is not inherently contradictory; what matters is morally defensible deliberation about values and valid individual consent; (iii) data privacy concerns cannot be reduced to other moral concerns and therefore deserve a specific, distinct protection. -/- Finally, because this is a thesis in applied ethics, I attempt an answer to the question as to how we ought to apply a value-based approach to practical data privacy concerns. I argue that a revised, three-pronged version of John Rawls’ reflective equilibrium, founded on the non-negotiable principle of respect for persons, is the best possible procedure to deliberate data privacy concerns in relation to other moral values. (shrink)

A scientific community can be modeled as a collection of epistemic agents attempting to answer questions, in part by communicating about their hypotheses and results. We can treat the pathways of scientific communication as a network. When we do, it becomes clear that the interaction between the structure of the network and the nature of the question under investigation affects epistemic desiderata, including accuracy and speed to community consensus. Here we build on previous work, both our own and others’, in (...) order to get a firmer grasp on precisely which features of scientific communities interact with which features of scientific questions in order to influence epistemic outcomes. (shrink)

The study of biodiversity spans many disciplines and includes data pertaining to species distributions and abundances, genetic sequences, trait measurements, and ecological niches, complemented by information on collection and measurement protocols. A review of the current landscape of metadata standards and ontologies in biodiversity science suggests that existing standards such as the Darwin Core terminology are inadequate for describing biodiversity data in a semantically meaningful and computationally useful way. Existing ontologies, such as the Gene Ontology and others in (...) the Open Biological and Biomedical Ontologies (OBO) Foundry library, provide a semantic structure but lack many of the necessary terms to describe biodiversity data in all its dimensions. In this paper, we describe the motivation for and ongoing development of a new Biological Collections Ontology, the Environment Ontology, and the Population and Community Ontology. These ontologies share the aim of improving data aggregation and integration across the biodiversity domain and can be used to describe physical samples and sampling processes (for example, collection, extraction, and preservation techniques), as well as biodiversity observations that involve no physical sampling. Together they encompass studies of: 1) individual organisms, including voucher specimens from ecological studies and museum specimens, 2) bulk or environmental samples (e.g., gut contents, soil, water) that include DNA, other molecules, and potentially many organisms, especially microbes, and 3) survey-based ecological observations. We discuss how these ontologies can be applied to biodiversity use cases that span genetic, organismal, and ecosystem levels of organization. We argue that if adopted as a standard and rigorously applied and enriched by the biodiversity community, these ontologies would significantly reduce barriers to data discovery, integration, and exchange among biodiversity resources and researchers. (shrink)

In the last half century we have gone from storing data on 5-1/4 inch floppy diskettes to cloud and now fog computing. But one should ask why so much data is being collected. Part of the answer is simple in light of scientific projects but why is there so much data on us? Then, we ask about its “interface” through fog computing. Such questions prompt this chapter on the philosophy of big data and fog computing. (...) After some background on definitions, origins and contemporary applications, the main discussion begins with thinking about modern data collection, management, and applications from a complexity standpoint. Big data is turned into knowledge but knowledge is extrapolated from the past and used to manage the future. Yet it is questionable whether humans have the capacity to manage contemporary technological and social complexity evidenced by our world in crisis and possibly on the brink of extinction. Such calls for a new way of studying societies from a scientific point of view. We are at the center of the observation from which big data emerge and are manipulated, the overall human project being not only to create an artificial brain with an attendant mind but a society that might be able to survive what “natural” humans cannot. (shrink)