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.

Between 2006 and 2011, humanity accumulated 1,600 EB of data. As a result of this growth, there is now more data produced than available storage. This article explores the problem of “Big Data,” arguing for an epistemological approach as a possible solution to this ever-increasing challenge.

Nowadays, protecting trust in social sciences also means engaging in open community dialogue, which helps to safeguard robustness and improve efficiency of research methods. The combination of open data, open review and open dialogue may sound simple but implementation in the real world will not be straightforward. However, in view of Begley and Ellis’s (2012) statement that, “the scientific process demands the highest standards of quality, ethics and rigour,” they are worth implementing. More importantly, they are feasible to work (...) on and likely will help to restore plausibility to social sciences research. Therefore, I feel it likely that the triplet of open data, open review and open dialogue will gradually emerge to become policy requirements regardless of the research funding source. (shrink)

A growing awareness of the lack of reproducibility has undermined society’s trust and esteem in social sciences. In some cases, well-known results have been fabricated or the underlying data have turned out to have weak technical foundations.

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)

We critically engage two traditional views of scientific data and outline a novel philosophical view that we call the pragmatic-representational view of data. On the PR view, data are representations that are the product of a process of inquiry, and they should be evaluated in terms of their adequacy or fitness for particular purposes. Some important implications of the PR view for data assessment, related to misrepresentation, context-sensitivity, and complementary use, are highlighted. The PR view provides (...) insight into the common but little-discussed practices of iteratively reusing and repurposing data, which result in many datasets’ having a phylogeny—an origin and complex evolutionary history—that is relevant to their evaluation and future use. We relate these insights to the open-data and data-rescue movements, and highlight several future avenues of research that build on the PR view of data. (shrink)

While the term “reactivity” has come to be associated with specific phenomena in the social sciences, having to do with subjects’ awareness of being studied, this paper takes a broader stance on this concept. I argue that reactivity is a ubiquitous feature of the psychological subject matter and that this fact is a precondition of experimental research, while also posing potential problems for the experimenter. The latter are connected to the worry about distorted data and experimental artifacts. But what (...) are experimental artifacts and what is the most productive way of dealing with them? In this paper, I approach these questions by exploring the ways in which experimenters in psychology simultaneously exploit and suppress the reactivity of their subject matter in order to produce experimental data that speak to the question or subject matter at hand. Highlighting the artificiality of experimental data, I raise the question of what distinguishes a genuine experimental result from an experimental artifact. My analysis construes experimental results as the outcomes of inferences from the data that take material background assumptions as auxiliary premises. Artifacts occur when one or more of these background assumptions are false, such that the data do not reliably serve the purposes they were generated for. I conclude by laying out the ways in which my analysis of data quality is relevant to, and informed by, recent debates about the replicability of experimental results. (shrink)

The theory of knowledge in early twentieth-century Anglo American philosophy was oriented toward phenomenally described cognition. There was a healthy respect for the mind-body problem, which meant that phenomena in both the mental and physical domains were taken seriously. Bertrand Russell's developing position on sense-data and momentary particulars drew upon, and ultimately became like, the neutral monism of Ernst Mach and William James. Due to a more recent behaviorist and physicalist inspired "fear of the mental", this development has been (...) down-played in historical work on early analytic philosophy. Such neglect assumes that the "linguistic turn" is a proper and permanent effect of twentieth-century philosophy, an assumption that distorts early analytic historiography, and begs a substantive philosophical question about thought and cognition. (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)

Data mining possess a significant threat to ethics, privacy, and legality, especially when we consider the fact that data mining makes it difficult for an individual or consumer (in the case of a company) to control accessibility and usage of his data. Individuals should be able to control how his/ her data in the data warehouse is being access and utilize while at the same time providing enabling environment which enforces legality, privacy and ethicality on (...) data scientists, or data engineer during data mining process. This paper review issues of legality, privacy, and ethicality in data mining, review processes of Data mining, and also proposes solution to current ethical and privacy issue in data mining. It introduces a new method which enforces data mining without infringing on the privacy of individual or consumer whose data are being used. The sole aim of this paper is to propose a new method of mining data which restricts scientists within the constraints of legality, privacy, and ethicality. (shrink)

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

Healthcare professionals decide wisely about personalized medicine, treatment plans, and resource allocation by utilizing big data analytics and machine learning. To guarantee that algorithmic recommendations are impartial and fair, however, ethical issues relating to prejudice and data privacy must be taken into account. Big data analytics and machine learning have a great potential to disrupt healthcare, and as these technologies continue to evolve, new opportunities to reform healthcare and enhance patient outcomes may arise. In order to investigate (...) the patient’s outcomes with empirical evidence, this research was conducted using an online survey to incorporate healthcare professionals, patient’s reviews, and clinical staff. The data were analyzed using SmartPLS 4.0 to predict the structural model. The findings revealed a direct impact as positive influence of using machine learning on healthcare performance and patient outcomes through big data analytics. Moreover, it is evident that this can lead to personalized treatment plans, early interventions, and improved patient outcomes. Additionally, big data analytics can help healthcare providers optimize resource allocation, improve operational efficiency, and reduce costs. The impact of big data analytics on patient outcome and healthcare performance is expected to continue to grow, making it an important area for investment and research. (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)

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.

Data is very important in any research experiment because it occupies a central place in making decisions based on findings resulting from the analysis of such data. Given its central role, it follows that such an important asset as data, deserve effective management in order to protect the integrity and provide an opportunity for effective problem-solving. The main thrust of this paper was to examine data management practices that should be adopted by scholars in maintaining the (...) quality of their research data. In achieving this, various concepts related to this paper were clarified. Various data management practices were also discussed beginning from data generation to data shredding. Based on the underlying observations from the light of the discussions made in this paper, it was recommended among others that: tertiary institutions in every part of the world should endeavour to establish a data management unit that will be saddled with the primary duty of formulating research data management policies, and the hosting of research data; every Journal should as a matter of compulsion, require the submission of data set corresponding to empirical papers submitted by authors and scholars. (shrink)

Big Data has the potential to enable unprecedentedly rigorous quantitative modeling of complex human social relationships and social structures. When such models are extended to nonhuman domains, they can undermine anthropocentric assumptions about the extent to which these relationships and structures are specifically human. Discoveries of relevant commonalities with nonhumans may not make us less human, but they promise to challenge fundamental views of what it is to be human.

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)

In recent years, neuroscience has begun to transform itself into a “big data” enterprise with the importation of computational and statistical techniques from machine learning and informatics. In addition to their translational applications such as brain-computer interfaces and early diagnosis of neuropathology, these tools promise to advance new solutions to longstanding theoretical quandaries. Here I critically assess whether these promises will pay off, focusing on the application of multivariate pattern analysis (MVPA) to the problem of reverse inference. I argue (...) that MVPA does not inherently provide a new answer to classical worries about reverse inference, and that the method faces pervasive interpretive problems of its own. Further, the epistemic setting of MVPA and other decoding methods contributes to a potentially worrisome shift towards prediction and away from explanation in fundamental neuroscience. (shrink)

Surveillance studies scholars and privacy scholars have each developed sophisticated, important critiques of the existing data-driven order. But too few scholars in either tradition have put forward alternative substantive conceptions of a good digital society. This, I argue, is a crucial omission. Unless we construct new “sociotechnical imaginaries,” new understandings of the goals and aspirations digital technologies should aim to achieve, the most surveillance studies and privacy scholars can hope to accomplish is a less unjust version of the technology (...) industry’s own vision for the future. (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)

This theme issue has the founding ambition of landscaping Data Ethics as a new branch of ethics that studies and evaluates moral problems related to data (including generation, recording, curation, processing, dissemination, sharing, and use), algorithms (including AI, artificial agents, machine learning, and robots), and corresponding practices (including responsible innovation, programming, hacking, and professional codes), in order to formulate and support morally good solutions (e.g. right conducts or right values). Data Ethics builds on the foundation provided by (...) Computer and Information Ethics but, at the same time, it refines the approach endorsed so far in this research field, by shifting the Level of Abstraction of ethical enquiries, from being information-centric to being data-centric. This shift brings into focus the different moral dimensions of all kinds of data, even the data that never translate directly into information but can be used to support actions or generate behaviours, for example. It highlights the need for ethical analyses to concentrate on the content and nature of computational operations — the interactions among hardware, software, and data — rather than on the variety of digital technologies that enables them. And it emphasises the complexity of the ethical challenges posed by Data Science. Because of such complexity, Data Ethics should be developed from the start as a macroethics, that is, as an overall framework that avoids narrow, ad hoc approaches and addresses the ethical impact and implications of Data Science and its applications within a consistent, holistic, and inclusive framework. Only as a macroethics Data Ethics will provide the solutions that can maximise the value of Data Science for our societies, for all of us, and for our environments. (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)

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)

This review delves into the influence of big data analytics on project management effectiveness and project success rates. By examining applications, accomplishments, hindrances, and emerging developments in the context of big data analytics and project management, this review provides insights into its transformative potential. Results indicate that big data analytics fosters improved project performance, more robust risk management, and heightened adaptability. However, challenges related to data quality, privacy, and project manager training remain to be addressed. This (...) review underscores the value of data-driven decision-making for both practitioners and researchers in the project management field. (shrink)

In this essay, we advocate that the issue of health data ethics should no longer be considered on the level of individual scientists or research labs, but rather as a problem involving all stakeholders, from publishers, funders, ethical committees to governments, for the sake of research integrity.

Was there a concept of data before the so-called ‘data revolution’? This paper contributes to the history of the concept of data by investigating uses of the term ‘data’ in texts of the Royal Society's Philosophical Transactions for the period 1665–1886. It surveys how the notion enters the journal as a technical term in mathematics, and charts how over time it expands into various other scientific fields, including Earth sciences, physics and chemistry. The paper argues that (...) in these texts the notion of data is not used merely as a rhetorical category, and also cannot strictly be identified with the category of evidence. Instead, the notion comes with an associated epistemic structure, one that is in line with its development from an early mathematical use. (shrink)

Medicine is often thought of as a science of the body, but it is also a science of data. In some contexts, it can even be asserted that data drive health. This article focuses on a key piece of data technology central to contemporary practices of medicine: the medical record. By situating the medical record in the perspective of its history, we inquire into how the kinds of data that are kept at sites of clinical encounter (...) often depend on informational requirements that originate well outside of the clinic, in particular in health insurance records systems. Although this dependency of today's electronic medical records on billing requirements is widely lamented by clinical providers, its history remains little studied. Following the archaeology of medicine developed by Michel Foucault in The Birth of the Clinic and expanding his methodology in light of more recent contributions to the field of media archaeology, this article excavates some of the underexplored technological conditions that help constitute today's electronic medical record. If in some contexts, it is true that data drive health, then an archaeology of medical records helps reveal how health insurance records often impact clinical care and, by extension, health and disease. (shrink)

Data security is, protecting data from ill- conceived get to, utilize, introduction, intrusion, change, examination, recording or destruction. Cloud computing is a sort of Internet-based computing that grants conjoint PC handling resources and information to PCs what's more, different gadgets according to necessity. It is a model that empowers universal, on-request access to a mutual pool of configurable computing resources. At present, security has been viewed as one of the best issues in the improvement of Cloud Computing. The (...) key issue in effective execution of Cloud Computing is to adequately deal with the security in the cloud applications. This paper talks about the part of cryptography in cloud computing to improve the data security. The expectation here is to get bits of knowledge another security approach with the usage of cryptography to secure information at cloud data centers. (shrink)

In this article, we show how it is possible to lawfully buy an election. The method we describe for buying an election is novel. The key things that make it possible to buy an election are the existence of public voter registration lists where one can see whether a given elector has voted in a particular election, and the existence of Big Data Analytics that with a high degree of accuracy can predict what a given elector will vote in (...) an upcoming election. Someone interested in buying an election can enter an employment contract with all, or some of, the opponent electors where these electors are paid to do a job that prevents them from voting. By purchasing access to the public voter registration lists, it is possible to verify ex-post whether the opponent electors that one has signed a contract with have abstained. In the last two sections of the article, we discuss several barriers that can undermine an attempt to buy an election in the manner we identify. (shrink)

Despite an enormous philosophical literature on models in science, surprisingly little has been written about data models and how they are constructed. In this paper, I examine the case of how paleodiversity data models are constructed from the fossil data. In particular, I show how paleontologists are using various model-based techniques to correct the data. Drawing on this research, I argue for the following related theses: first, the ‘purity’ of a data model is not a (...) measure of its epistemic reliability. Instead it is the fidelity of the data that matters. Second, the fidelity of a data model in capturing the signal of interest is a matter of degree. Third, the fidelity of a data model can be improved ‘vicariously’, such as through the use of post hoc model-based correction techniques. And, fourth, data models, like theoretical models, should be assessed as adequate for particular purposes. (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)

The word data (sing. datum) is originally Latin for “things given or granted”. Because of such a humble and generic meaning, the term enjoys considerable latitude both in its technical and in its common usage, for almost anything can be referred to as a “thing given or granted” (Cherry [1978]). With some reasonable approximation, four principal interpretations may be identified in the literature. The first three captures part of the nature of the concept and are discussed in the next (...) section. The fourth is the most fundamental and satisfactory, so it is discussed separately, in section three. On its basis, some further clarifications about the nature of data are introduced in sections four to six. A reminder about the social, legal and ethical issues raised by the use of data concludes this entry. (shrink)

Decision-making by a Data and Safety Monitoring Board (DSMB) regarding clinical trial conduct and termination is intricate and largely limited by cases and rules. Decision-making by legal jury is also intricate and largely constrained by cases and rules. In this paper, I argue by analogy that legal decision-making, which strives for a balance between competing demands of conservatism and innovation, supplies a good basis to the logic behind DSMB decision-making. Using the doctrine of precedents in legal reasoning as my (...) central analog will lead us to a decision-theoretic analogy for much more systematic documentation of decisions in clinical trials. My conclusion is twofold: every DSMB decision should articulate a clear general principle (a ratio decidendi) that gives reason for the decision; and all such decisions should be made public. I use Bartha’s (2010) theory of analogical arguments to both frame and assess my argument by analogy. (shrink)

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

In recent years, the growing academic field called “Data Science” has made many promises. On closer inspection, relatively few of these promises have come to fruition. A critique of Data Science from the phenomenological tradition can take many forms. This paper addresses the promise of “participation” in Data Science, taking inspiration from Paul Majkut’s 2000 work in Glimpse, “Empathy’s Impostor: Interactivity and Intersubjectivity,” and some insights from Heidegger’s "The Question Concerning Technology." The description of Data Science (...) provided in the scholarly literature includes “the study of the generalizable extraction of knowledge from data” (Dhar 2013, 64), “data stewardship and data sharing…access to data at higher volumes and more quickly, and the potential for replication and augmentation of existing research” (Hartter et al., 2013, 1), and “personal information, health status, daily activities and shopping preferences that are recorded and used to give us instant feedback and recommendations based on previous online behavior.” (Shin 2013) United States universities have begun to offer graduate programs in “data science”, anticipating the growth of this field for marketing, national security, and health industries. These universities include New York University, Columbia University, Stanford, Northwestern, and Syracuse. (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)

Motivation: • Breaking barriers in publishing demands a proactive attitude • Open data, open review and open dialogue in making social sciences plausible .

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)

Leonelli (2016) suggested a relational view of data against a representational view by emphasizing data-centric biology rather than the theory-centric tradition in the philosophy of science. This is because the first view allows for data journeys across laboratories using public database resources, whereas the second does not. This paper examines Leonelli’s strategies to defend the relational view of data. Contrary to Leonelli’s intention, it indicates that her strategies led to unnecessary misunderstandings of the relationships among (...) class='Hi'>data, representation, and evidential values. It will be argued that evidential values of data are inevitably based on a representational feature and that it is better to reconcile both views of data as complementary rather than contrasting. (shrink)

Big Data ethics involves adherence to the concepts of right and wrong behavior regarding data, especially personal data. Big Data ethics focuses on structured or unstructured data collectors and disseminators. Big Data ethics is supported, at EU level, by extensive documentation, which seeks to find concrete solutions to maximize the value of Big Data without sacrificing fundamental human rights. The European Data Protection Supervisor (EDPS) supports the right to privacy and the right (...) to the protection of personal data in the respect of human dignity. DOI: 10.13140/RG.2.2.30867.43041. (shrink)

Big Data poate genera, prin inferențe, noi cunoașteri și perspective. Paradigma care rezultă din utilizarea Big Data generează noi oportunități. Un motiv de îngrijorare majoră în cazul Big Data se datorează faptului că oamenii de știință de date tind să lucreze cu date despre subiectele pe care nu le cunosc și cu care nu au fost niciodată în contact, fiind înstrăinați de produsul final al activității lor (aplicarea analizelor). Un studiu recent afirmă că ceasta poate fi motivul (...) unui fenomen cunoscut ca alienarea digitală. Big Data are influențe mari la nivel guvernamental, afectând pozitiv societatea. DOI: 10.13140/RG.2.2.27117.84961. (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 .

All too often, the requirements for actionability and accountability of data infrastructures are conceptualised as incompatible and leading to a trade-off situation where increasing one will unavoidably decrease the other. Through a comparative analysis of two data infrastructures used to share genomic data about the SARS-COV-2 virus, we argue that making data actionable for knowledge development involves a commitment to ensuring that the data in question are representative of the phenomena being studied and accountable to (...) data subjects and users. This in turn presupposes that: (1) enough data are contributed by a wide and diverse set of relevant sources; (2) mechanisms of feedback and inclusion are set up to ensure that data contributors can participate data governance and interpretation, thereby helping to adequately contextualise data; and (3) accountability extends to the ways in which data infrastructures are run, financed and positioned vis-à-vis the communities they are meant to serve. Such a model of data sharing can only work on the understanding that data do not need to be easily accessible to be actionable; rather, actionability depends on the responsiveness and accountability of data infrastructures, and the efforts invested in ensuring open communication among contributors. (shrink)

DNA sequencers, Twitter, MRIs, Facebook, particle accelerators, Google Books, radio telescopes, Tumblr: what do these things have in common? According to the evangelists of “data science,” all of these are instruments for observing reality at unprecedentedly large scales and fine granularities. This perspective ignores the social reality of these very different technological systems, ignoring how they are made, how they work, and what they mean in favor of an exclusive focus on what they generate: Big Data. But no (...) data, big or small, can be interpreted without an understanding of the process that generated them. Statistical data science is applicable to systems that have been designed as scientific instruments, but is likely to lead to confusion when applied to systems that have not. In those cases, a historical inquiry is preferable. (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)

It has been argued that ethical frameworks for data science often fail to foster ethical behavior, and they can be difficult to implement due to their vague and ambiguous nature. In order to overcome these limitations of current ethical frameworks, we propose to integrate the analysis of the connections between technical choices and sociocultural factors into the data science process, and show how these connections have consequences for what data subjects can do, accomplish, and be. Using healthcare (...) as an example, attention to sociocultural conversion factors relevant to health can help in navigating technical choices that require broader considerations of the sociotechnical system, such as metric tradeoffs in model validation, resulting in better ethical and technical choices. This approach promotes awareness of the ethical dimension of technical choices by data scientists and others, and that can foster the cultivation of 'ethical skills' as integral to data science. (shrink)

This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical (...) data donation. Two major risks are also identified—harm to others, and lack of control over the use of data—which could follow from unregulated donation of medical data. The argument that record-based medical research should proceed without the need to secure informed consent is rejected, and instead a voluntary and participatory approach to using personal medical data should be followed. The analysis concludes by stressing the need to develop an ethical code for data donation to minimise the risks, and offers five foundational principles for ethical medical data donation suggested as a draft code. (shrink)

Digital data help data scientists and epidemiologists track and predict outbreaks of disease. Mobile phone GPS data, social media data, or other forms of information updates such as the progress of epidemics are used by epidemiologists to recognize disease spread among specific groups of people. Targeting groups as potential carriers of a disease, rather than addressing individuals as patients, risks causing harm to groups. While there are rules and obligations at the level of the individual, we (...) have to reach a stage in the development of data analytics where groups are protected as entities. This chapter offers a deeper examination of harms to the groups. (shrink)

The first two sections of the paper characterize the nineteenth century respect for the phenomenal by considering Helmholtz’s position and James’ and Russell’s move to neutral monism. The third section displays a moment’s sympathy with those who recoiled from the latter view -- but only a moment’s. The recoil overshot what was a reasonable response, and denied the reality of the phenomenal, largely in the name of the physical or the material. The final two sections of the paper develop a (...) third way, which retains a healthy respect for the mental and for the mind–body relation, does not attempt to equate objects with congeries of sensations, and does not attempt to deny the reality of the phenomenal. In fact, I will claim that on some conceptions (and not merely idealist-phenomenalist conceptions), the phenomenal is a fact of nature, and hence a part of the natural world. Some aspects of this third way are familiar in the various representational and critical realisms of the twentieth-century. But the realization -- or, more neutrally, the conception -- that the natural might include the phenomenal is less familiar. Yet this position has its predecessors too, not only among the physicists and psychologists of the nineteenth century, but among major physicists (as opposed to physicalist philosophers) and psychologists of the twentieth. [A re-edited version of this paper appears in Gary Hatfield, Perception and Cognition: Essays in the Philosophy of Psychology, Clarendon Press, 2009.]. (shrink)