Switch to: References

Add citations

You must login to add citations.
  1. The Fate of Explanatory Reasoning in the Age of Big Data.Frank Cabrera - 2021 - Philosophy and Technology 34 (4):645-665.
    In this paper, I critically evaluate several related, provocative claims made by proponents of data-intensive science and “Big Data” which bear on scientific methodology, especially the claim that scientists will soon no longer have any use for familiar concepts like causation and explanation. After introducing the issue, in Section 2, I elaborate on the alleged changes to scientific method that feature prominently in discussions of Big Data. In Section 3, I argue that these methodological claims are in tension with a (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Gender Transition: Is There a Right to Be Forgotten?Mónica Correia, Guilhermina Rêgo & Rui Nunes - 2021 - Health Care Analysis 29 (4):283-300.
    The European Union faced high risks from personal data proliferation to individuals’ privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual’s control over their data is the so-called “right to be forgotten”, the right to obtain from the controller the erasure of records. In gender transition, this (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Fairness as Equal Concession: Critical Remarks on Fair AI.Christopher Yeomans & Ryan van Nood - 2021 - Science and Engineering Ethics 27 (6):1-14.
    Although existing work draws attention to a range of obstacles in realizing fair AI, the field lacks an account that emphasizes how these worries hang together in a systematic way. Furthermore, a review of the fair AI and philosophical literature demonstrates the unsuitability of ‘treat like cases alike’ and other intuitive notions as conceptions of fairness. That review then generates three desiderata for a replacement conception of fairness valuable to AI research: It must provide a meta-theory for understanding tradeoffs, entailing (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • The Right to Refuse Diagnostics and Treatment Planning by Artificial Intelligence.Thomas Ploug & Søren Holm - 2020 - Medicine, Health Care and Philosophy 23 (1):107-114.
    In an analysis of artificially intelligent systems for medical diagnostics and treatment planning we argue that patients should be able to exercise a right to withdraw from AI diagnostics and treatment planning for reasons related to the physician’s role in the patients’ formation of and acting on personal preferences and values, the bias and opacity problem of AI systems, and rational concerns about the future societal effects of introducing AI systems in the health care sector.
    Download  
     
    Export citation  
     
    Bookmark   7 citations  
  • The Ethics of Algorithms: Mapping the Debate.Brent Mittelstadt, Patrick Allo, Mariarosaria Taddeo, Sandra Wachter & Luciano Floridi - 2016 - Big Data and Society 3 (2).
    In information societies, operations, decisions and choices previously left to humans are increasingly delegated to algorithms, which may advise, if not decide, about how data should be interpreted and what actions should be taken as a result. More and more often, algorithms mediate social processes, business transactions, governmental decisions, and how we perceive, understand, and interact among ourselves and with the environment. Gaps between the design and operation of algorithms and our understanding of their ethical implications can have severe consequences (...)
    Download  
     
    Export citation  
     
    Bookmark   100 citations  
  • Designing the Health-Related Internet of Things: Ethical Principles and Guidelines.Brent Mittelstadt - 2017 - Information 8 (3):77.
    The conjunction of wireless computing, ubiquitous Internet access, and the miniaturisation of sensors have opened the door for technological applications that can monitor health and well-being outside of formal healthcare systems. The health-related Internet of Things (H-IoT) increasingly plays a key role in health management by providing real-time tele-monitoring of patients, testing of treatments, actuation of medical devices, and fitness and well-being monitoring. Given its numerous applications and proposed benefits, adoption by medical and social care institutions and consumers may be (...)
    Download  
     
    Export citation  
     
    Bookmark   4 citations  
  • What is Data Ethics?Luciano Floridi & Mariarosaria Taddeo - 2016 - Philosophical Transactions of the Royal Society A 374 (2083).
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark   38 citations  
  • The Influence of Business Incentives and Attitudes on Ethics Discourse in the Information Technology Industry.Sanju Ahuja & Jyoti Kumar - 2021 - Philosophy and Technology 34 (4):941-966.
    As information technologies have become synonymous with progress in modern society, several ethical concerns have surfaced about their societal implications. In the past few decades, information technologies have had a value-laden impact on social evolution. However, there is limited agreement on the responsibility of businesses and innovators concerning the ethical aspects of information technologies. There is a need to understand the role of business incentives and attitudes in driving technological progress and to understand how they steer the ethics discourse on (...)
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Negotiating Authenticity in Technological Environments.Siri Beerends & Ciano Aydin - 2021 - Philosophy and Technology 34 (4):1665-1685.
    Essentialists understand authenticity as an inherent quality of a person, object, artifact, or place, whereas constructionists consider authenticity as a social creation without any pre-given essence, factuality, or reality. In this paper, we move beyond the essentialist-constructionist dichotomy. Rather than focusing on the question whether authenticity can be found or needs to be constructed, we hook into the idea that authenticity is an interactive, culturally informed process of negotiation. In addition to essentialist and constructionist approaches, we discuss a third, less (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • The Ethics of Biomedical ‘Big Data’ Analytics.Brent Mittelstadt - 2019 - Philosophy and Technology 32 (1):17-21.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Big Data, Big Waste? A Reflection on the Environmental Sustainability of Big Data Initiatives.Federica Lucivero - 2020 - Science and Engineering Ethics 26 (2):1009-1030.
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • From Individual to Group Privacy in Big Data Analytics.Brent Mittelstadt - 2017 - Philosophy and Technology 30 (4):475-494.
    Mature information societies are characterised by mass production of data that provide insight into human behaviour. Analytics has arisen as a practice to make sense of the data trails generated through interactions with networked devices, platforms and organisations. Persistent knowledge describing the behaviours and characteristics of people can be constructed over time, linking individuals into groups or classes of interest to the platform. Analytics allows for a new type of algorithmically assembled group to be formed that does not necessarily align (...)
    Download  
     
    Export citation  
     
    Bookmark   14 citations  
  • Big Data for Biomedical Research and Personalised Medicine: An Epistemological and Ethical Cross-Analysis.Thierry Magnin & Mathieu Guillermin - 2017 - Human and Social Studies. Research and Practice 6 (3):13-36.
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Disruptive Innovation and Moral Uncertainty.Philip J. Nickel - 2020 - NanoEthics 14 (3):259-269.
    This paper develops a philosophical account of moral disruption. According to Robert Baker, moral disruption is a process in which technological innovations undermine established moral norms without clearly leading to a new set of norms. Here I analyze this process in terms of moral uncertainty, formulating a philosophical account with two variants. On the harm account, such uncertainty is always harmful because it blocks our knowledge of our own and others’ moral obligations. On the qualified harm account, there is no (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Computer Simulations in Science and Engineering. Concept, Practices, Perspectives.Juan Manuel Durán - 2018 - Springer.
    This book addresses key conceptual issues relating to the modern scientific and engineering use of computer simulations. It analyses a broad set of questions, from the nature of computer simulations to their epistemological power, including the many scientific, social and ethics implications of using computer simulations. The book is written in an easily accessible narrative, one that weaves together philosophical questions and scientific technicalities. It will thus appeal equally to all academic scientists, engineers, and researchers in industry interested in questions (...)
    Download  
     
    Export citation  
     
    Bookmark   7 citations  
  • Synergies in Innovation: Lessons Learnt from Innovation Ethics for Responsible Innovation.Michel Bourban & Johan Rochel - 2021 - Philosophy and Technology 34 (2):373-394.
    This paper draws on the emerging field of innovation ethics to complement the more established field of responsible innovation by focusing on key ethical issues raised by technological innovations. One key limitation of influential frameworks of RI is that they tend to neglect some key ethical issues raised by innovation, as well as major normative dimensions of the notion of responsibility. We explain how IE could enrich RI by stressing the more important role that ethical analysis should play in RI. (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Can Blockchain Solve the Dilemma in the Ethics of Genomic Biobanks?Valérie Racine - 2021 - Science and Engineering Ethics 27 (3):1-14.
    In discussions on the ethics of genome collections and biobanks, the main worry about whether we are permitted to collect and use individuals’ genomic and genetic data is the potential for the violation of individuals’ right to informational privacy. Yet, if we do not permit these endeavors, we risk giving up on the future benefits of biomedical research. In this paper, I describe a private venture in blockchain genomics that seeks to provide an apt solution to concerns about potential privacy (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • The Ethics of Uncertainty for Data Subjects.Philip Nickel - 2019 - In Jenny Krutzinna & Luciano Floridi (eds.), The Ethics of Medical Data Donation. Springer Verlag. pp. 55-74.
    Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...)
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • An African Relational Approach to Healthcare and Big Data Challenges.Cornelius Ewuoso - 2021 - Science and Engineering Ethics 27 (3):1-18.
    Big Data has amplified some challenges in the healthcare context. One significant challenge is how to use healthcare big data in ways that honor individual rights to informed consent or privacy. Careful analysis from diverse backgrounds will be vital in contributing ethical guidelines that can adequately address healthcare Big Data's growing complexities globally. Especially, the study argues that an under-explored African philosophy of Ubuntu can usefully influence big data practices in ways that address this challenge without undermining its benefits. Ubuntu (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Artificial Intelligence, Social Media and Depression. A New Concept of Health-Related Digital Autonomy.Sebastian Laacke, Regina Mueller, Georg Schomerus & Sabine Salloch - 2021 - American Journal of Bioethics 21 (7):4-20.
    The development of artificial intelligence in medicine raises fundamental ethical issues. As one example, AI systems in the field of mental health successfully detect signs of mental disorders...
    Download  
     
    Export citation  
     
    Bookmark   3 citations  
  • From FAIR Data to Fair Data Use: Methodological Data Fairness in Health-Related Social Media Research.Hywel Williams, Lora Fleming, Benedict W. Wheeler, Rebecca Lovell & Sabina Leonelli - 2021 - Big Data and Society 8 (1).
    The paper problematises the reliability and ethics of using social media data, such as sourced from Twitter or Instagram, to carry out health-related research. As in many other domains, the opportunity to mine social media for information has been hailed as transformative for research on well-being and disease. Considerations around the fairness, responsibilities and accountabilities relating to using such data have often been set aside, on the understanding that as long as data were anonymised, no real ethical or scientific issue (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Leveraging Artificial Intelligence in Marketing for Social Good—An Ethical Perspective.Erik Hermann - forthcoming - Journal of Business Ethics:1-19.
    Artificial intelligence is shaping strategy, activities, interactions, and relationships in business and specifically in marketing. The drawback of the substantial opportunities AI systems and applications provide in marketing are ethical controversies. Building on the literature on AI ethics, the authors systematically scrutinize the ethical challenges of deploying AI in marketing from a multi-stakeholder perspective. By revealing interdependencies and tensions between ethical principles, the authors shed light on the applicability of a purely principled, deontological approach to AI ethics in marketing. To (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • “Strongly Recommended” Revisiting Decisional Privacy to Judge Hypernudging in Self-Tracking Technologies.Marjolein Lanzing - 2019 - Philosophy and Technology 32 (3):549-568.
    This paper explores and rehabilitates the value of decisional privacy as a conceptual tool, complementary to informational privacy, for critiquing personalized choice architectures employed by self-tracking technologies. Self-tracking technologies are promoted and used as a means to self-improvement. Based on large aggregates of personal data and the data of other users, self-tracking technologies offer personalized feedback that nudges the user into behavioral change. The real-time personalization of choice architectures requires continuous surveillance and is a very powerful technology, recently coined as (...)
    Download  
     
    Export citation  
     
    Bookmark   12 citations  
  • Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Alex McKeown, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan & Ilina Singh - 2021 - Science and Engineering Ethics 27 (1):1-21.
    Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark   1 citation  
  • Getting into the engine room: a blueprint to investigate the shadowy steps of AI ethics.Johan Rochel & Florian Evéquoz - forthcoming - AI and Society:1-14.
    Enacting an AI system typically requires three iterative phases where AI engineers are in command: selection and preparation of the data, selection and configuration of algorithmic tools, and fine-tuning of the different parameters on the basis of intermediate results. Our main hypothesis is that these phases involve practices with ethical questions. This paper maps these ethical questions and proposes a way to address them in light of a neo-republican understanding of freedom, defined as absence of domination. We thereby identify different (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Understanding and Managing Responsible Innovation.Hans Bennink - 2020 - Philosophy of Management 19 (3):317-348.
    As a relational concept, responsible innovation can be made more tangible by asking innovation of what and responsibility of whom for what? Arranging the scattered field of responsible innovation comprehensively, starting from an anthropological point of view, into five fields of tension and five categories of spearheads, may be theoretically and practically helpful while offering suggestions for both research and management.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • What Is the Good of It—Ethical Controls of Human Subject Health Research?: Curtin University Annual Ethics Lecture.Robert French - 2018 - Journal of Bioethical Inquiry 15 (4):589-602.
    The term “ethics” covers a multitude of virtues and possibly some sins where ethical perspectives differ. Given the diversity of ethical philosophies there is a question about what common ground can, or should, inform health research ethics. At a minimum it must be consistent with the law. Beyond that, ethics embraces a variety of possible approaches. This raises the question—what criteria are applied in determining the appropriate approach and what standards by way of quality control are applied to its decisional (...)
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • ‘My Fitbit Thinks I Can Do Better!’ Do Health Promoting Wearable Technologies Support Personal Autonomy?John Owens & Alan Cribb - 2019 - Philosophy and Technology 32 (1):23-38.
    This paper critically examines the extent to which health promoting wearable technologies can provide people with greater autonomy over their health. These devices are frequently presented as a means of expanding the possibilities people have for making healthier decisions and living healthier lives. We accept that by collecting, monitoring, analysing and displaying biomedical data, and by helping to underpin motivation, wearable technologies can support autonomy over health. However, we argue that their contribution in this regard is limited and that—even with (...)
    Download  
     
    Export citation  
     
    Bookmark   11 citations  
  • Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent.J. Woolley - 2019 - Philosophy and Technology 32 (1):111-134.
    Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • The Ethics of Biomedical Big Data: Brent Daniel Mittelstadt and Luciano Floridi, Eds. 2016, Springer International Publishing.Paul Mason - 2017 - Journal of Bioethical Inquiry 14 (4):571-574.
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Big Data Analytics, Infectious Diseases and Associated Ethical Impacts.Chiara Garattini, Jade Raffle, Dewi N. Aisyah, Felicity Sartain & Zisis Kozlakidis - 2019 - Philosophy and Technology 32 (1):69-85.
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark   5 citations  
  • An Ethics Framework for Big Data in Health and Research.Vicki Xafis, G. Owen Schaefer, Markus K. Labude, Iain Brassington, Angela Ballantyne, Hannah Yeefen Lim, Wendy Lipworth, Tamra Lysaght, Cameron Stewart, Shirley Sun, Graeme T. Laurie & E. Shyong Tai - 2019 - Asian Bioethics Review 11 (3):227-254.
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark   11 citations  
  • A Qualitative Study of Big Data and the Opioid Epidemic: Recommendations for Data Governance.Elizabeth A. Evans, Elizabeth Delorme, Karl Cyr & Daniel M. Goldstein - 2020 - BMC Medical Ethics 21 (1):1-13.
    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 (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Thinking About the Idea of Consent in Data Science Genomics: How ‘Informed’ is It?Jennifer Greenwood & Andrew Crowden - forthcoming - Nursing Philosophy.
    Download  
     
    Export citation  
     
    Bookmark  
  • On the Ethics of Algorithmic Decision-Making in Healthcare.Thomas Grote & Philipp Berens - 2020 - Journal of Medical Ethics 46 (3):205-211.
    In recent years, a plethora of high-profile scientific publications has been reporting about machine learning algorithms outperforming clinicians in medical diagnosis or treatment recommendations. This has spiked interest in deploying relevant algorithms with the aim of enhancing decision-making in healthcare. In this paper, we argue that instead of straightforwardly enhancing the decision-making capabilities of clinicians and healthcare institutions, deploying machines learning algorithms entails trade-offs at the epistemic and the normative level. Whereas involving machine learning might improve the accuracy of medical (...)
    Download  
     
    Export citation  
     
    Bookmark   16 citations  
  • Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data.Sara Belfrage, Niels Lynöe & Gert Helgesson - forthcoming - Public Health Ethics.
    We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • A Tidal Wave of Inevitable Data? Assetization in the Consumer Genomics Testing Industry.Nicole Gross & Susi Geiger - 2021 - Business and Society 60 (3):614-649.
    We bring together recent discussions on data capitalism and biocapitalization by studying value flows in consumer genomics firms—an industry at the intersection between health care and technology realms. Consumer genomics companies market genomic testing services to consumers as a source of fun, altruism, belonging and knowledge. But by maintaining a multisided or platform business model, these firms also engage in digital capitalism, creating financial profit from data brokerage. This is a precarious balance to strike: If these companies’ business models consist (...)
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Health Data Research on Sudden Cardiac Arrest: Perspectives of Survivors and Their Next-of-Kin.Dick L. Willems, Hanno L. Tan, Marieke T. Blom, Rens Veeken & Marieke A. R. Bak - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Ethics of Artificial Intelligence and Robotics.Vincent C. Müller - 2020 - In Edward Zalta (ed.), Stanford Encyclopedia of Philosophy. Palo Alto, Cal.: CSLI, Stanford University. pp. 1-70.
    Artificial intelligence (AI) and robotics are digital technologies that will have significant impact on the development of humanity in the near future. They have raised fundamental questions about what we should do with these systems, what the systems themselves should do, what risks they involve, and how we can control these. - After the Introduction to the field (§1), the main themes (§2) of this article are: Ethical issues that arise with AI systems as objects, i.e., tools made and used (...)
    Download  
     
    Export citation  
     
    Bookmark   10 citations  
  • Do Groups Have Moral Standing in Unregulated mHealth Research?Joon-Ho Yu & Eric Juengst - 2020 - Journal of Law, Medicine and Ethics 48 (S1):122-128.
    Biomedical research using data from participants’ mobile devices borrows heavily from the ethos of the “citizen science” movement, by delegating data collection and transmission to its volunteer subjects. This engagement gives volunteers the opportunity to feel like partners in the research and retain a reassuring sense of control over their participation. These virtues, in turn, give both grass-roots citizen science initiatives and institutionally sponsored mHealth studies appealing features to flag in recruiting participants from the public. But while grass-roots citizen science (...)
    Download  
     
    Export citation  
     
    Bookmark   3 citations  
  • Big Data, Big Waste? A Reflection on the Environmental Sustainability of Big Data Initiatives.Federica Lucivero - 2020 - Science and Engineering Ethics 26 (2):1009-1030.
    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 (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Motives of Contributing Personal Data for Health Research: (Non-)Participation in a Dutch Biobank.R. Broekstra, E. L. M. Maeckelberghe, J. L. Aris-Meijer, R. P. Stolk & S. Otten - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Logged Out: Ownership, Exclusion and Public Value in the Digital Data and Information Commons.Barbara Prainsack - 2019 - Big Data and Society 6 (1).
    In recent years, critical scholarship has drawn attention to increasing power differentials between corporations that use data and people whose data is used. A growing number of scholars see digital data and information commons as a way to counteract this asymmetry. In this paper I raise two concerns with this argument: First, because digital data and information can be in more than one place at once, governance models for physical common-pool resources cannot be easily transposed to digital commons. Second, not (...)
    Download  
     
    Export citation  
     
    Bookmark   9 citations  
  • Negotiating the Reuse of Health-Data: Research, Big Data, and the European General Data Protection Regulation.Ulrike Felt & Johannes Starkbaum - 2019 - Big Data and Society 6 (2).
    Before the EU General Data Protection Regulation entered into force in May 2018, we witnessed an intense struggle of actors associated with data-dependent fields of science, in particular health-related academia and biobanks striving for legal derogations for data reuse in research. These actors engaged in a similar line of argument and formed issue alliances to pool their collective power. Using descriptive coding followed by an interpretive analysis, this article investigates the argumentative repertoire of these actors and embeds the analysis in (...)
    Download  
     
    Export citation  
     
    Bookmark   3 citations  
  • Conceptualizations of Big Data and Their Epistemological Claims in Healthcare: A Discourse Analysis.Antoinette de Bont, Rik Wehrens & Marthe Stevens - 2018 - Big Data and Society 5 (2).
    In recent years, the healthcare field welcomed an emerging field of practices captured under the umbrella term ‘Big Data’. This term is surrounded with positive rhetoric and promises about the ability to analyse real-world data quickly and comprehensively. Such rhetoric is highly consequential in shaping debates on Big Data. While the fields of Science and Technology Studies and Critical Data Studies have been instrumental in elaborating the neglected and problematic dimensions of Big Data, it remains an open question how and (...)
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Democratic Governance in an Age of Datafication: Lessons From Mapping Government Discourses and Practices.Joanna Redden - 2018 - Big Data and Society 5 (2).
    There is an abundance of enthusiasm and optimism about how governments at all levels can make use of big data, algorithms and artificial intelligence. There is also growing concern about the risks that come with these new systems. This article makes the case for greater government transparency and accountability about uses of big data through a Government of Canada qualitative research case study. Adapting a method from critical cartographers, I employ counter-mapping to map government big data practices and internal discussions (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Dissecting the Algorithmic Leviathan: On the Socio-Political Anatomy of Algorithmic Governance.Pascal D. König - 2020 - Philosophy and Technology 33 (3):467-485.
    A growing literature is taking an institutionalist and governance perspective on how algorithms shape society based on unprecedented capacities for managing social complexity. Algorithmic governance altogether emerges as a novel and distinctive kind of societal steering. It appears to transcend established categories and modes of governance—and thus seems to call for new ways of thinking about how social relations can be regulated and ordered. However, as this paper argues, despite its novel way of realizing outcomes of collective steering and coordination, (...)
    Download  
    Translate
     
     
    Export citation  
     
    Bookmark   1 citation  
  • How Should We Think About Clinical Data Ownership?Angela Ballantyne - 2020 - Journal of Medical Ethics 46 (5):289-294.
    The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data (...)
    Download  
     
    Export citation  
     
    Bookmark   4 citations  
  • Consent and the Ethical Duty to Participate in Health Data Research.Angela Ballantyne & G. Owen Schaefer - 2018 - Journal of Medical Ethics 44 (6):392-396.
    The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional (...)
    Download  
     
    Export citation  
     
    Bookmark   9 citations  
  • Towards Coherent Data Policy for Biomedical Research with ELSI 2.0: Orchestrating Ethical, Legal and Social Strategies.J. Patrick Woolley - 2017 - Journal of Medical Ethics 43 (11):741-743.
    As the recent inaugural Ethical, Legal, and Social Issues 2.0 conference made clear, the effects of information communication technology are pervasive in biomedical research. Data initiatives are arising in all corners of biomedicine. Data sharing efforts already promised to surpass even the ambitious goals of the National Human Genome Research Institute, only 5 years after publication of its 10-year vision. ELSI research was established, in part, to address challenges of open data access and data sharing. However, by and large, ELSI (...)
    Download  
     
    Export citation  
     
    Bookmark