The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of (...) the ethical implications of Big Data lags behind. In order to bridge such a gap, this article systematically and comprehensively analyses academic literature concerning the ethical implications of Big Data, providing a watershed for future ethical investigations and regulations. Particular attention is paid to biomedical Big Data due to the inherent sensitivity of medical information. By means of a meta-analysis of the literature, a thematic narrative is provided to guide ethicists, data scientists, regulators and other stakeholders through what is already known or hypothesised about the ethical risks of this emerging and innovative phenomenon. Five key areas of concern are identified: informed consent, privacy, ownership, epistemology and objectivity, and ‘Big Data Divides’ created between those who have or lack the necessary resources to analyse increasingly large datasets. Critical gaps in the treatment of these themes are identified with suggestions for future research. Six additional areas of concern are then suggested which, although related have not yet attracted extensive debate in the existing literature. It is argued that they will require much closer scrutiny in the immediate future: the dangers of ignoring group-level ethical harms; the importance of epistemology in assessing the ethics of Big Data; the changing nature of fiduciary relationships that become increasingly data saturated; the need to distinguish between ‘academic’ and ‘commercial’ Big Data practices in terms of potential harm to data subjects; future problems with ownership of intellectual property generated from analysis of aggregated datasets; and the difficulty of providing meaningful access rights to individual data subjects that lack necessary resources. Considered together, these eleven themes provide a thorough critical framework to guide ethical assessment and governance of emerging Big Data practices. (shrink)

Big data, big impact -- Values and actions -- Current practices -- Aligning values and actions.

Our study considers the governance, ethics and operational challenges associated with the acquisition, manipulation and commodification of ‘big data’ in the financial services sector. To the best of our knowledge, there are no published studies describing empirical research undertaken within companies in this sector to understand how they are responding to such challenges: our field-based research is a significant initial contribution in this respect. We describe the results of a micro-ethnographic study undertaken in a small-to-medium-sized company developing disruptive, (...) technology-related platforms and services in the banking and retail sectors based on big data and associated analytics: these are used to derive commercially valuable insights from personal customer data in exchange for cash back and targeted rewards. The company was found to employ a multi-level innovation governance approach, underpinned by an ethical strategy based on a principle of mutual benefit. Opt-in and informed consent for using data for specific purposes was supported by principles of data minimisation and anonymisation, with unrestricted use of secondary, anonymised and aggregated data to develop insights. Governance, which included contextual data protection legislation, payment-card industry data usage standards and internal corporate controls, presented as bespoke organisational practices relating to data security and privacy. These in total set the governance and ethics frame for big data innovation at the company within which it has had to be both adaptive and responsive under conditions of normative and regulatory uncertainty. (shrink)

This book presents cutting edge research on the new ethical challenges posed by biomedical Big Data technologies and practices. 'Biomedical Big Data' refers to the analysis of aggregated, very large datasets to improve medical knowledge and clinical care. The book describes the ethical problems posed by aggregation of biomedical datasets and re-use/re-purposing of data, in areas such as privacy, consent, professionalism, power relationships, and ethical governance of Big Data platforms. Approaches and methods are discussed that can (...) be used to address these problems to achieve the appropriate balance between the social goods of biomedical Big Data research and the safety and privacy of individuals. Seventeen original contributions analyse the ethical, social and related policy implications of the analysis and curation of biomedical Big Data, written by leading experts in the areas of biomedical research, medical and technology ethics, privacy, governance and data protection. The book advances our understanding of the ethical conundrums posed by biomedical Big Data, and shows how practitioners and policy-makers can address these issues going forward. (shrink)

BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring (...) ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science.ConclusionsWe believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology (...) of biobank, database, genetic, and epidemiological research. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology (...) of biobank, database, genetic, and epidemiological research. (shrink)

Faced with the exponential development of Big Data and both its legal and economic repercussions, we are still slightly in the dark concerning the use of digital information. In the perpetual balance between confidentiality and transparency, this data will lead us to call into question how we understand certain paradigms, such as the Hippocratic Oath in medicine. As a consequence, a reflection on the study of the risks associated with the ethical issues surrounding the design and manipulation of (...) this "massive data" seems to be essential. This book provides a direction and ethical value to these significant volumes of data. It proposes an ethical analysis model and recommendations to better keep this data in check. This empirical and ethico-technical approach brings together the first aspects of a moral framework directed toward thought, conscience and the responsibility of citizens concerned by the use of data of a personal nature. Defines Big Data applications in health Presents the ethical value of the medical datasphere via the description of a model of an ethical analysis of Big Data Provides the recommendations and steps necessary for successful management and governance of personal health data Helps readers determine what conditions are essential for the development of the study of Big Data. (shrink)

Aims To examine the understanding of the ethical dilemmas associated with Big Data and artificial intelligence (AI) among Jordanian medical students, physicians in training, and senior practitioners. Methods We implemented a literature-validated questionnaire to examine the knowledge, attitudes, and practices of the target population during the period between April and August 2023. Themes of ethical debate included privacy breaches, consent, ownership, augmented biases, epistemology, and accountability. Participants’ responses were showcased using descriptive statistics and compared between groups using t-test or (...) ANOVA. Results We included 466 participants. The greater majority of respondents were interns and residents (50.2%), followed by medical students (38.0%). Most participants were affiliated with university institutions (62.4%). In terms of privacy, participants acknowledged that Big Data and AI were susceptible to privacy breaches (39.3%); however, 59.0% found such breaches justifiable under certain conditions. For ethical debacles involving informed consent, 41.6% and 44.6% were aware that obtaining informed consent posed an ethical limitation in Big Data and AI applications and denounced the concept of “broad consent”, respectively. In terms of ownership, 49.6% acknowledged that data cannot be owned yet accepted that institutions could hold a quasi-control of such data (59.0%). Less than 50% of participants were aware of Big Data and AI’s abilities to augment or create new biases in healthcare. Furthermore, participants agreed that researchers, institutions, and legislative bodies were responsible for ensuring the ethical implementation of Big Data and AI. Finally, while demonstrating limited experience with using such technology, participants generally had positive views of the role of Big Data and AI in complementing healthcare. Conclusion Jordanian medical students, physicians in training and senior practitioners have limited awareness of the ethical risks associated with Big Data and AI. Institutions are responsible for raising awareness, especially with the upsurge of such technology. (shrink)

Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy (...) to the commercialisation of public sector health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical 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)

Surveillance is essential for communicable disease prevention and control. Traditional notification of demographic and clinical information, about individuals with selected infectious diseases, allows appropriate public health action and is protected by public health and privacy legislation, but is slow and insensitive. Big data–based electronic surveillance, by commercial bodies and government agencies, which draws on a plethora of internet- and mobile device–based sources, has been widely accepted, if not universally welcomed. Similar anonymous digital sources also contain syndromic information, which can (...) be analysed, using customised algorithms, to rapidly predict infectious disease outbreaks, but the data are nonspecific and predictions sometimes misleading. However, public health authorities could use these online sources, in combination with de-identified personal health data, to provide more accurate and earlier warning of infectious disease events—including exotic or emerging infections—even before the cause is confirmed, and allow more timely public health intervention. Achieving optimal benefits would require access to selected data from personal electronic health and laboratory records and the potential to re-identify individuals found to be involved in outbreaks, to ensure appropriate care and infection control. Despite existing widespread digital surveillance and major potential community benefits of extending its use to communicable disease control, there is considerable public disquiet about allowing public health authorities access to personal health data. Informed public discussion, greater transparency and an ethical framework will be essential to build public trust in the use of new technology for communicable disease control. (shrink)

Agricultural Big Data analytics (ABDA) is being proposed to ensure better farming practices, decision-making, and a sustainable future for humankind. However, the use and adoption of these technologies may bring about potentially undesirable consequences, such as exercises of power. This paper will analyse Brey’s five distinctions of power relationships (manipulative, seductive, leadership, coercive, and forceful power) and apply them to the use agricultural Big Data. It will be shown that ABDA can be used as a form of manipulative (...) power to initiate cheap land grabs and acquisitions. Seductive power can be exercised by pressuring farmers into situations they would not have otherwise chosen (such as installing monitors around their farm and limited access to their farm and machinery). It will be shown that agricultural technology providers (ATPs) demonstrate leadership power by getting farmers to agree to use ABDA without informed consent. Coercive power is exercised when ATPs threaten farmers with the loss of ABDA if they do not abide by the policies and requirements of the ATP or are coerced to remain with the ATP because of fear of legal and economic reprisal. ATPs may use ABDA to determine willingness-to-pay rates from farmers, using this information to force farmers into precarious and vulnerable positions. Altogether, this paper will apply these five types of power to the use and implementation of ABDA to demonstrate that it is being used to exercise power in the agricultural industry. (shrink)

As big data techniques become widespread in journalism, both as the subject of reporting and as newsgathering tools, the ethics of data science must inform and be informed by media ethics. This article explores emerging problems in ethical research using big data techniques. It does so using the duty-based framework advanced by W.D. Ross, who has significantly influenced both research science and media ethics. A successful framework must provide stability and flexibility. Without stability, ethical (...) precommitments will vanish as technology rapidly shifts costs. Without flexibility, traditional approaches will rapidly become obsolete in the face of technological change. The article concludes that Ross's duty-based approach both provides stability in the face of rapid technological change and flexibility to innovate to achieve the original purpose of basic ethical principles. (shrink)

Compartmentalizing our distinct personal identities is increasingly difficult in big data reality. Pictures of the person we were on past vacations resurface in employers’ Google searches; LinkedIn which exhibits our income level is increasingly used as a dating web site. Whether on vacation, at work, or seeking romance, our digital selves stream together. One result is that a perennial ethical question about personal identity has spilled out of philosophy departments and into the real world. Ought we possess one, unified (...) identity that coherently integrates the various aspects of our lives, or, incarnate deeply distinct selves suited to different occasions and contexts? At bottom, are we one, or many? The question is not only palpable today, but also urgent because if a decision is not made by us, the forces of big data and surveillance capitalism will make it for us by compelling unity. Speaking in favor of the big data tendency, Facebook’s Mark Zuckerberg promotes the ethics of an integrated identity, a single version of selfhood maintained across diverse contexts and human relationships. This essay goes in the other direction by sketching two ethical frameworks arranged to defend our compartmentalized identities, which amounts to promoting the dis-integration of our selves. One framework connects with natural law, the other with language, and both aim to create a sense of selfhood that breaks away from its own past, and from the unifying powers of big data technology. (shrink)

This study focuses on examining the thematic landscape of the history of scholarly publication in business ethics. We analyze the titles, abstracts, full texts, and citation information of all research papers published in the field’s leading journal, the Journal of Business Ethics, from its inaugural issue in February 1982 until December 2016—a dataset that comprises 6308 articles and 42 million words. Our key method is a computational algorithm known as probabilistic topic modeling, which we use to examine objectively (...) the field’s latent thematic landscape based on the vast volume of scholarly texts. This “big-data” approach allows us not only to provide time-specific snapshots of various research topics, but also to track the dynamic evolution of each topic over time. We further examine the pattern of individual papers’ topic diversity and the influence of individual papers’ topic diversity on their impact over time. We conclude this study with our recommendation for future studies in business ethics research. (shrink)

The emergence of Big Data has added a new aspect to conceptualizing the use of digital technologies in the delivery of public services and for realizing digital governance. This article explores, via the ‘value-chain’ approach, the evolution of digital governance research, and aligns it with current developments associated with data analytics, often referred to as ‘Big Data’. In many ways, the current discourse around Big Data reiterates and repeats established commentaries within the eGovernment research community. This (...) body of knowledge provides an opportunity to reflect on the ‘promise’ of Big Data, both in relation to service delivery and policy formulation. This includes, issues associated with the quality and reliability of data, from mixing public and private sector data, issues associated with the ownership of raw and manipulated data, and ethical issues concerning surveillance and privacy. These insights and the issues raised help assess the value of Big Data in government and smart city environments. (shrink)

Background The opioid epidemic has enabled rapid and unsurpassed use of big data on people with opioid use disorder to design initiatives to battle the public health crisis, generally without adequate input from impacted communities. Efforts informed by big data are saving lives, yielding significant benefits. Uses of big data may also undermine public trust in government and cause other unintended harms. Objectives We aimed to identify concerns and recommendations regarding how to use big data on (...) opioid use in ethical ways. Methods We conducted focus groups and interviews in 2019 with 39 big data stakeholders who had interest in or knowledge of the Public Health Data Warehouse maintained by the Massachusetts Department of Public Health. Results Concerns regarding big data on opioid use are rooted in potential privacy infringements due to linkage of previously distinct data systems, increased profiling and surveillance capabilities, limitless lifespan, and lack of explicit informed consent. Also problematic is the inability of affected groups to control how big data are used, the potential of big data to increase stigmatization and discrimination of those affected despite data anonymization, and uses that ignore or perpetuate biases. Participants support big data processes that protect and respect patients and society, ensure justice, and foster patient and public trust in public institutions. Recommendations for ethical big data governance offer ways to narrow the big data divide, enact shared data governance, cultivate public trust and earn social license for big data uses, and refocus ethical approaches. Conclusions Using big data to address the opioid epidemic poses ethical concerns which, if unaddressed, may undermine its benefits. Findings can inform guidelines on how to conduct ethical big data governance and in ways that protect and respect patients and society, ensure justice, and foster patient and public trust in public institutions. (shrink)

Consumer-based datasets are the products of data brokerage firms that agglomerate millions of personal records on the adult US population. This big data commodity is purchased by both companies and individual clients for purposes such as marketing, risk prevention, and identity searches. The sheer magnitude and population coverage of available consumer-based datasets and the opacity of the business practices that create these datasets pose emergent ethical challenges within the computational social sciences that have begun to incorporate consumer-based datasets (...) into empirical research. To directly engage with the core ethical debates around the use of consumer-based datasets within social science research, I first consider two case study applications of consumer-based dataset-based scholarship. I then focus on three primary ethical dilemmas within consumer-based datasets regarding human subject research, participant privacy, and informed consent in conversation with the principles of the seminal Belmont Report. (shrink)

Big Data and biopolitics are two major issues currently attracting attention in public health discourse, but also in sociology of knowledge, STS Studies as well as in philosophy of science and bioethics. The paper considers big data to be a new form and instrument of biopolitics which addresses both the categories of body and space. It is expected to fundamentally transform health care systems, domestic environments and practices of self-observation and reflection. Accordingly the paper points out some problems (...) and pitfalls as well as open questions that have emerged in the field of AAL, which merit more attention in future public and academic debate. (shrink)

Ever since Big Data became a mot du jour across social fields, optical metaphors such as the microscope began to surface in popular discourse to describe and qualify its epistemological impact. While the persistence of optics seems to be at odds with the datafication of vision, this article suggests that the optical metaphor offers an opportunity to reflect about the material consequences of the modes of seeing and knowing that currently shape datafied worlds. Drawing on feminist new materialism, the (...) article investigates the optical metaphor as a material-discursive practice that actively constitutes the world, as metaphors imply modes of thinking, knowing and doing that have material enactions. Expanding visual culture theories, the notion of ‘optical unconscious’ is taken up to discuss the tensions between displacement and persistence of optics within datafied worlds, that is, how optical vision is displaced but also mobilised and repurposed by data-driven knowledge. In dialogue with feminist science and technology studies and speculative ethics, I suggest that the datafication of vision offers a chance to reconceptualize the sense of sight towards a sensorial engagement with Big Data premised on responsibility, care, and an ethics of unknowability. Within this framework, vision may be conceived differently, perhaps not only as enhancement and control, but as generator of new possibilities. Ultimately, the article proposes that the visual theories after which Big Data is being imagined matter not only for our understanding of Big Data's epistemic potential, but also for the possibility of shaping emerging data worlds. (shrink)

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and (...) information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research. (shrink)

According to Facebook’s Mark Zuckerberg, big data reality means, “The days of having a different image for your co-workers and for others are coming to an end, which is good because having multiple identities represents a lack of integrity.” Two sets of questions follow. One centers on technology and asks how big data mechanisms collapse our various selves (work-self, family-self, romantic-self) into one personality. The second question set shifts from technology to ethics by asking whether we want (...) the kind of integrity that Zuckerberg lauds, and that big data technology enables. The negative response is explored by sketching three ethical conceptions of selfhood that recommend personal identity be understood as dis-integrating. The success of the strategies partially depends upon an undermining use of big data platforms. (shrink)

In this paper, we discuss several problems with current Big data practices which, we claim, seriously erode the role of informed consent as it pertains to the use of personal information. To illustrate these problems, we consider how the notion of informed consent has been understood and operationalised in the ethical regulation of biomedical research (and medical practices, more broadly) and compare this with current Big data practices. We do so by first discussing three types of problems that (...) can impede informed consent with respect to Big data use. First, we discuss the transparency (or explanation) problem. Second, we discuss the re-repurposed data problem. Third, we discuss the meaningful alternatives problem. In the final section of the paper, we suggest some solutions to these problems. In particular, we propose that the use of personal data for commercial and administrative objectives could be subject to a ‘soft governance’ ethical regulation, akin to the way that all projects involving human participants (e.g., social science projects, human medical data and tissue use) are regulated in Australia through the Human Research Ethics Committees (HRECs). We also consider alternatives to the standard consent forms, and privacy policies, that could make use of some of the latest research focussed on the usability of pictorial legal contracts. (shrink)

Purpose – Investments in the technologies of borders and their securitisation continue to be a focal point for many governments across the globe. This paper is concerned with a particular example of such technologies, namely, “Big Data” analytics. In the past two years, the technology of Big Data has gained a remarkable popularity within a variety of sectors, ranging from business and government to scientific and research fields. While Big Data techniques are often extolled as the next (...) frontier for innovation and productivity, they are also raising many ethical and political issues. The aim of this paper is to consider some of these issues and provide a critical reflection on the implications of using Big Data for the governance of borders. Design/methodology/approach – The author draws on the example of the new Big Data solution recently developed by IBM for the Australian Customs and Border Protection Service. The system, which relies on data collected from Passenger Name Records, aims to facilitate and automate mechanisms of profiling enable the identification of “high-risk” travellers. It is argued that the use of such Big Data techniques risks augmenting the function and intensity of borders. Findings – The main concerns addressed here revolve around three key elements, namely, the problem of categorisation, the projective and predictive nature of Big Data techniques and their approach to the future and the implications of Big Data on understandings and practices of identity. Originality/value – By exploring these issues, the paper aims to contribute to the debates on the impact of information and communications technology-based surveillance in border management. (shrink)

The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano (...) Floridi have brought together thirty scholars in an edited volume that forms part of Springer’s Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefully devised sections, this volume engages with core theoretical, ethical, and regulatory challenges posed by biomedical big data. (shrink)

The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano (...) Floridi have brought together thirty scholars in an edited volume that forms part of Springer’s Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefully devised sections, this volume engages with core theoretical, ethical, and regulatory challenges posed by biomedical big data. (shrink)

The speed of development in Big Data and associated phenomena, such as social media, has surpassed the capacity of the average consumer to understand his or her actions and their knock-on effects. We are moving towards changes in how ethics has to be perceived: away from individual decisions with specific and knowable outcomes, towards actions by many unaware that they may have taken actions with unintended consequences for anyone. Responses will require a rethinking of ethical choices, the lack (...) thereof and how this will guide scientists, governments, and corporate agencies in handling Big Data. This essay elaborates on the ways Big Data impacts on ethical conceptions. (shrink)

The exponential accumulation, processing and accrual of big data in healthcare are only possible through an equally rapidly evolving field of big data analytics. The latter offers the capacity to rationalize, understand and use big data to serve many different purposes, from improved services modelling to prediction of treatment outcomes, to greater patient and disease stratification. In the area of infectious diseases, the application of big data analytics has introduced a number of changes in the information (...) accumulation models. These are discussed by comparing the traditional and new models of data accumulation. Big data analytics is fast becoming a crucial component for the modelling of transmission—aiding infection control measures and policies—emergency response analyses required during local or international outbreaks. However, the application of big data analytics in infectious diseases is coupled with a number of ethical impacts. Four key areas are discussed in this paper: automation and algorithmic reliance impacting freedom of choice, big data analytics complexity impacting informed consent, reliance on profiling impacting individual and group identities and justice/fair access and increased surveillance and population intervention capabilities impacting behavioural norms and practices. Furthermore, the extension of big data analytics to include information derived from personal devices, such as mobile phones and wearables as part of infectious disease frameworks in the near future and their potential ethical impacts are discussed. Considered together, the need for a constructive and transparent inclusion of ethical questioning in this rapidly evolving field becomes an increasing necessity in order to provide a moral foundation for the societal acceptance and responsible development of the technological advancement. (shrink)

The health care industry will be a large customer of big data while predictive analytics already underlie important health care and public health initiatives. Yet big data are not benign. For example, data brokers, the businesses that buy, process, and sell “big data” are performing an end-run around health data protection by creating data “proxies” outside of HIPAA-protected space. From 2012-14 various branches of the federal government published five major reports on privacy. All five (...) were in favor of increased regulation of data brokers. However, their recommendations for legislative or regulatory intervention were quite diverse. This essay describes the various proposals and offers a critical synthesis. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. -/- Today, it is (...) easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. -/- Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

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

The need for foreknowledge intensifies and a prophetic promise of today’s palm readers causes us wet palms: letting the world speak for itself. Big Data comes with the promise of enabling people to listen to that speaking world and of gaining accurate foreknowledge by Big Data predictions. The uncertainty of our modern, complex world overstrains our present coping capabilities, causing a feeling of slipping off a slippery slope, which in turn causes a need for increasing our own foreknowledge. (...) Part of the Big Data promise is to grant better foreknowledge by overcoming the wrongness of scientific theory or causation assumptions. But thus, people have no other option than to believe in these results and perform their actions in good faith. This makes Big Data based outcomes a matter of faith. This article argues that Big Data based outcomes can be seen as today’s oracle, as prophecies without prophets and reflects on the consequences of that perspective. (shrink)

There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to (...) the collection, storage, and re-use of research data. This paper gives a brief overview of the landscape of data sharing via data repositories and discusses some of the key ethical issues raised by the sharing of health-related research data, including expectations of privacy and confidentiality, the transparency of repository governance structures, access restrictions, as well as data ownership and the fair attribution of credit. To consider these issues and the values that are pertinent, the paper applies the deliberative balancing approach articulated in the Ethics Framework for Big Data in Health and Research to the domain of Openness in Big Data and Data Repositories. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

Discussion of uses of biomedical data often proceeds on the assumption that the data are generated and shared solely or largely within the health sector. However, this assumption must be challenged because increasingly large amounts of health and well-being data are being gathered and deployed in cross-sectoral contexts such as social media and through the internet of things and wearable devices. Cross-sectoral sharing of data thus refers to the generation, use and linkage of biomedical data (...) beyond the health sector. This paper considers the challenges that arise from this phenomenon. If we are to benefit fully, it is important to consider which ethical values are at stake and to reflect on ways to resolve emerging ethical issues across ecosystems where values, laws and cultures might be quite distinct. In considering such issues, this paper applies the deliberative balancing approach of the Ethics Framework for Big Data in Health and Research to the domain of cross-sectoral big data. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. (shrink)

With the increase in the costs of providing education and concerns about financial responsibility, heightened consideration of accountability and results, elevated awareness of the range of teacher skills and student learning styles and needs, more focus is being placed on the promises offered by online software and educational technology. One of the most heavily marketed, exciting and controversial applications of edtech involves the varied educational programs to which different students are exposed based on how big data applications have evaluated (...) their likely learning profiles. Characterized most often as ‘personalized learning,’ these programs raise a number of ethical concerns especially when used at the K-12 level. This paper analyzes the range of these ethical concerns arguing that characterizing them under the general rubric of ‘privacy’ oversimplifies the concerns and makes it too easy for advocates to dismiss or minimize them. Six distinct ethical concerns are identified: information privacy; anonymity; surveillance; autonomy; non-discrimination; and ownership of information. Particular attention is paid to whether personalized learning programs raise concerns similar to those raised about educational tracking in the 1950s. The paper closes with discussion of three themes that are important to consider in ethical and policy discussions. (shrink)

This paper addresses a problem that has so far been neglected by scholars investigating the ethics of Big Data and policy makers: that is the ethical implications of Big Data initiatives’ environmental impact. Building on literature in environmental studies, cultural studies and Science and Technology Studies, the article draws attention to the physical presence of data, the material configuration of digital service, and the space occupied by data. It then explains how this material and situated (...) character of data raises questions concerning the ethics of the increasingly fashionable Big Data discourses. It argues that attention should be paid to the vocabulary currently used when discussing the governance of data initiatives; the internal tension between current data initiatives and environmental policies; issues of fair distribution. The article explains how taking into account these aspects would allow for a more responsible behaviour in the context of data storage and production. (shrink)

This paper addresses a problem that has so far been neglected by scholars investigating the ethics of Big Data and policy makers: that is the ethical implications of Big Data initiatives’ environmental impact. Building on literature in environmental studies, cultural studies and Science and Technology Studies, the article draws attention to the physical presence of data, the material configuration of digital service, and the space occupied by data. It then explains how this material and situated (...) character of data raises questions concerning the ethics of the increasingly fashionable Big Data discourses. It argues that attention should be paid to the vocabulary currently used when discussing the governance of data initiatives; the internal tension between current data initiatives and environmental policies; issues of fair distribution. The article explains how taking into account these aspects would allow for a more responsible behaviour in the context of data storage and production. (shrink)

Big data techniques, data-driven science and their technological applications raise many serious ethical questions, notably about privacy protection. In this paper, we highlight an entanglement between epistemology and ethics of big data. Discussing the mobilisation of big data in the fields of biomedical research and health care, we show how an overestimation of big data epistemic power – of their objectivity or rationality understood through the lens of neutrality – can become ethically threatening. Highlighting (...) the irreducible non-neutrality at play in big data tools, we insist upon the ethical importance of a critical epistemological approach in which big data are understood as possibly valuable only when coupled with human intelligence and evaluative rationality. (shrink)

This article argues that the fact that an action will compound a prior injustice counts as a reason against doing the action. I call this reason The Anti-Compounding Injustice principle or aci. Compounding injustice and the aci principle are likely to be relevant when analyzing the moral issues raised by “big data” and its combination with the computational power of machine learning and artificial intelligence. Past injustice can infect the data used in algorithmic decisions in two distinct ways. (...) Sometimes prior injustice undermines the accuracy of the data itself. In these contexts, improving accuracy will also help to avoid compounding injustice. Other times, past injustice produces real-world differences among people with regard to skills, health, wealth, and other traits that employers, lenders, and others seek to measure. When decisions are based on accurate data that itself results from prior injustice, these decisions can also compound injustice. This second dynamic has received less attention than the first but is especially important because improving the accuracy of data will not mitigate this unfairness. (shrink)

We live in the Information Age. Advances over the past 50 years in computing technology have enabled ever-expanding capacity to generate, store, transfer, process and analyse information about people, societies, products, services, the environment—nearly every aspect of the world. In parallel, concerns over how such data is being used have emerged, focusing especially on issues of privacy and confidentiality. Yet as technological capabilities continue to expand, the debate over ethical uses of data inevitably has evolved as well. Whereas (...) we used to just talk about data, now there is great concern over Big Data. This chapter explores what, exactly, Big Data is; the ethical ramifications of its emergence, particularly for consent and anonymization; and what sorts of policy solutions are being proposed to address these emerging challenges. We will not defend one particular approach, but hope this chapter can be a useful reference for those who are contemplating difficult questions surrounding responsible management of Big Data. (shrink)

The question we pose in this paper is: How can wisdom and its inherent drive for integration help information systems in the development of practices for responsibly and ethically managing and using big data, ubiquitous information and algorithmic knowledge and so make the world a better place? We use the recent financial crises to illustrate the perils of an overreliance on and misuse of data, information and predictive knowledge when global Information Systems are not wisely integrated. Our analysis (...) shows that the global financial crisis was in part caused by a serious lack of integration of information with the larger context of social, cultural, economic and political dynamics. Integration of all the variables in a global and information hungry industry is exceptionally difficult, and so “exceptionality” of some kind is needed to make sufficient integration happen. Wisdom, we suggest, is the exceptionality needed to lead successful integration. We expect that a wisdom-based shift can lead to more organizationally effective and socially responsible Information Systems. (shrink)

In this contribution, we will discuss the opportunities and challenges arising from memory institutions' need to redefine their archival strategies for contemporary collecting in a world of big data. We will reflect on this topic by critically examining the case study of the UK Web Archive, which is made up of the six UK Legal Deposit Libraries: the British Library, National Library of Scotland, National Library of Wales, Bodleian Libraries Oxford, Cambridge University Library and Trinity College Dublin. The UK (...) Web Archive aims to archive, preserve and give access to the UK web space. This is achieved through an annual domain crawl, first undertaken in 2013, in addition to more frequent crawls of key websites and specially curated collections which date back as far as 2005. These collections reflect important aspects of British culture and events that shape society. This commentary will explore a number of questions including: what heritage is captured and what heritage is instead neglected by the UK Web archive? What heritage is created in the form of new data and what are its properties? What are the ethical issues that memory institutions face when developing these web archiving practices? What transformations are required to overcome such challenges and what institutional futures can we envisage? (shrink)

The explosion of data grows at a rate of roughly five trillion bits a second, giving rise to greater urgency in conceptualizing the infosphere and understanding its implications for knowledge and public policy. Philosophers of technology and information technologists alike who wrestle with ontological and epistemological questions of digital information tend to emphasize, as Floridi does, information as our new ecosystem and human beings as interconnected informational organisms, inforgs at home in ambient intelligence. But the linguistic and conceptual representations (...) of Big Data—the massive volume of both structured and unstructured data—and the real world practice of data-mining for patterns and meaningful interpretation of evidence reveal tension and ambiguity in the bold promise of data analytics. This paper explores the tacit epistemology of the rhetoric and representation of Big Data and suggests a richer account of its ambiguities and the paradox of its real world materiality. We argue that Big Data should be recognized as manifesting multiple and conflicting trajectories that reflect human intentionality and particular patterns of power and authority. Such patterns require attentive exploration and moral appraisal if we are to resist simplistic informationist ontologies of Big Data, and the subtle forms of control in the political ecology of Big Data that undermine its promise as transformational knowledge. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the (...) Science, Health and Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy (...) to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)