Switch to: References

Add citations

You must login to add citations.
  1. 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 (...)
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Marieke A. R. Bak & Dick L. Willems - 2022 - Science and Engineering Ethics 28 (4):1-20.
    In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...)
    Direct download (3 more)  
     
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  • 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 (...)
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   8 citations  
  • 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   9 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 (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • It is Not a Big Deal: A Qualitative Study of Clinical Biobank Donation Experience and Motives.Ksenia Eritsyan & Natalia Antonova - 2022 - BMC Medical Ethics 23 (1):1-11.
    BackgroundThe success of biobanking is directly linked to the willingness of people to donate their biological materials for research and storage. Ethical issues related to patient consent are an essential component of the current biobanking agenda. The majority of data available are focused on population-based biobanks in USA, Canada and Western Europe. The donation decision process and its ethical applications in clinical populations and populations in countries with other cultural contexts are very limited. This study aimed to evaluate the decision-making (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Trust and Digital Privacy in Healthcare: A Cross-Sectional Descriptive Study of Trust and Attitudes Towards Uses of Electronic Health Data Among the General Public in Sweden.Niels Lynøe, Gert Helgesson & Sara Belfrage - 2022 - BMC Medical Ethics 23 (1):1-8.
    BackgroundThe ability of healthcare to protect sensitive personal data in medical records and registers might influence public trust, which in turn might influence willingness to allow healthcare to use such data. The aim of this study was to examine how the general public’s trust relates to their attitudes towards uses of health data.MethodsA stratified sample from the general Swedish population received a questionnaire about their willingness to share health data. Respondents were also asked about their trust in the management and (...)
    Direct download (3 more)  
     
    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...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   15 citations  
  • Advancing a Data Justice Framework for Public Health Surveillance.Mara Buchbinder, Eric Juengst, Stuart Rennie, Colleen Blue & David L. Rosen - 2022 - AJOB Empirical Bioethics 13 (3):205-213.
    Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download  
     
    Export citation  
     
    Bookmark   136 citations  
  • Leveraging Artificial Intelligence in Marketing for Social Good—An Ethical Perspective.Erik Hermann - 2022 - Journal of Business Ethics 179 (1):43-61.
    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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  • Privacy and Health Practices in the Digital Age.Monique Pyrrho, Leonardo Cambraia & Viviane Ferreira de Vasconcelos - 2022 - American Journal of Bioethics 22 (7):50-59.
    Increasing privacy concerns are arising from expanding use of aggregated personal information in health practices. Conversely, in light of the promising benefits of data driven healthcare, privacy...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   10 citations  
  • Ethical Issues in Social Science Research Employing Big Data.Mohammad Hosseini, Michał Wieczorek & Bert Gordijn - 2022 - Science and Engineering Ethics 28 (3):1-21.
    This paper analyzes the ethics of social science research employing big data. We begin by highlighting the research gap found on the intersection between big data ethics, SSR and research ethics. We then discuss three aspects of big data SSR which make it warrant special attention from a research ethics angle: the interpretative character of both SSR and big data, complexities of anticipating and managing risks in publication and reuse of big data SSR, and the paucity of regulatory oversight and (...)
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • On the Ethical and Epistemological Utility of Explicable AI in Medicine.Christian Herzog - 2022 - Philosophy and Technology 35 (2):1-31.
    In this article, I will argue in favor of both the ethical and epistemological utility of explanations in artificial intelligence -based medical technology. I will build on the notion of “explicability” due to Floridi, which considers both the intelligibility and accountability of AI systems to be important for truly delivering AI-powered services that strengthen autonomy, beneficence, and fairness. I maintain that explicable algorithms do, in fact, strengthen these ethical principles in medicine, e.g., in terms of direct patient–physician contact, as well (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  • Individual Benefits and Collective Challenges: Experts’ Views on Data-Driven Approaches in Medical Research and Healthcare in the German Context.Silke Schicktanz & Lorina Buhr - 2022 - Big Data and Society 9 (1).
    Healthcare provision, like many other sectors of society, is undergoing major changes due to the increased use of data-driven methods and technologies. This increased reliance on big data in medicine can lead to shifts in the norms that guide healthcare providers and patients. Continuous critical normative reflection is called for to track such potential changes. This article presents the results of an interview-based study with 20 German and Swiss experts from the fields of medicine, life science research, informatics and humanities (...)
    No categories
    Direct 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   23 citations  
  • Fertility Dynamics and Life History Tactics Vary by Socioeconomic Position in a Transitioning Cohort of Postreproductive Chilean Women.Pablo José Varas Enríquez, Luseadra McKerracher & Nicolás Montalva Rivera - 2022 - Human Nature 33 (2):83-114.
    Globally, mortality and fertility rates generally fall as resource abundance increases. This pattern represents an evolutionary paradox insofar as resource-rich ecological contexts can support higher numbers of offspring, a component of biological fitness. This paradox has not been resolved, in part because the relationships between fertility, life history strategies, reproductive behavior, and socioeconomic conditions are complex and cultural-historically contingent. We aim to understand how we might make sense of this paradox in the specific context of late-twentieth-century, mid–demographic transition Chile. We (...)
    No categories
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • The Future of Value Sensitive Design.Batya Friedman, David Hendry, Steven Umbrello, Jeroen Van Den Hoven & Daisy Yoo - 2020 - Paradigm Shifts in ICT Ethics: Proceedings of the 18th International Conference ETHICOMP 2020.
    In this panel, we explore the future of value sensitive design (VSD). The stakes are high. Many in public and private sectors and in civil society are gradually realizing that taking our values seriously implies that we have to ensure that values effectively inform the design of technology which, in turn, shapes people’s lives. Value sensitive design offers a highly developed set of theory, tools, and methods to systematically do so.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  • A Research Ethics Framework for the Clinical Translation of Healthcare Machine Learning.Melissa D. McCradden, James A. Anderson, Elizabeth A. Stephenson, Erik Drysdale, Lauren Erdman, Anna Goldenberg & Randi Zlotnik Shaul - 2022 - American Journal of Bioethics 22 (5):8-22.
    The application of artificial intelligence and machine learning technologies in healthcare have immense potential to improve the care of patients. While there are some emerging practices surro...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   10 citations  
  • Thinking About the Idea of Consent in Data Science Genomics: How ‘Informed’ is It?Jennifer Greenwood & Andrew Crowden - forthcoming - Nursing Philosophy.
    Direct download  
     
    Export citation  
     
    Bookmark  
  • A Code of Digital Ethics: laying the foundation for digital ethics in a science and technology company.Sarah J. Becker, André T. Nemat, Simon Lucas, René M. Heinitz, Manfred Klevesath & Jean Enno Charton - forthcoming - AI and Society:1-11.
    The rapid and dynamic nature of digital transformation challenges companies that wish to develop and deploy novel digital technologies. Like other actors faced with this transformation, companies need to find robust ways to ethically guide their innovations and business decisions. Digital ethics has recently featured in a plethora of both practical corporate guidelines and compilations of high-level principles, but there remains a gap concerning the development of sound ethical guidance in specific business contexts. As a multinational science and technology company (...)
    Direct download (3 more)  
    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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download (3 more)  
    Translate
     
     
    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 (...)
    No categories
    Direct download (2 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark   1 citation  
  • “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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   17 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 (...)
    No categories
    Direct download (2 more)  
     
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   15 citations  
  • Communicable Disease Surveillance Ethics in the Age of Big Data and New Technology.Gwendolyn L. Gilbert, Chris Degeling & Jane Johnson - 2019 - Asian Bioethics Review 11 (2):173-187.
    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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 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. (...)
    No categories
    Direct download (2 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    No categories
    Direct download (2 more)  
     
    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 (...)
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark   4 citations  
  • 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 (...)
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark   13 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 (...)
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark   4 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 (...)
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark   4 citations  
  • 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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  • 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 (...)
    Direct download (2 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   1 citation  
  • 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 (...)
    Direct 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   45 citations  
  • The Ethics of Biomedical ‘Big Data’ Analytics.Brent Mittelstadt - 2019 - Philosophy and Technology 32 (1):17-21.
  • 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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   16 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 (...)
    No categories
    Direct download (3 more)  
     
    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, (...)
    Direct download (3 more)  
     
    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 (...)
    Direct download (3 more)  
    Translate
     
     
    Export citation  
     
    Bookmark  
  • 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 (...)
    Direct download (2 more)  
    Translate
     
     
    Export citation  
     
    Bookmark   2 citations