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  1. Beyond Data Collection: Ethical Issues in Minority Research.Eli Talbert - 2019 - Ethics and Behavior 29 (7):531-546.
    This article examines ethical concerns surrounding research on minority issues. Specifically, it addresses whether researchers have an obligation to consider the impact that minority research can have on vulnerable populations and their own backgrounds before conducting or assessing minority research for publication. The article argues for such an obligation mainly from a consequentialist perspective and then explores possible strategies for assessing and meeting that obligation. Finally, it explores the possible negative secondary effects of those strategies and censorship concerns.
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  • 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.
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  • 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 (...)
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  • Do Groups Have Moral Standing in Unregulated mHealth Research?Joon-Ho Yu & Eric Juengst - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):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 (...)
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  • 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.
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  • 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 (...)
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  • 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 (...)
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  • 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 (...)
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  • ‘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 (...)
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  • 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 (...)
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  • 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 (...)
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  • The Threat of Algocracy: Reality, Resistance and Accommodation.John Danaher - 2016 - Philosophy and Technology 29 (3):245-268.
    One of the most noticeable trends in recent years has been the increasing reliance of public decision-making processes on algorithms, i.e. computer-programmed step-by-step instructions for taking a given set of inputs and producing an output. The question raised by this article is whether the rise of such algorithmic governance creates problems for the moral or political legitimacy of our public decision-making processes. Ignoring common concerns with data protection and privacy, it is argued that algorithmic governance does pose a significant threat (...)
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  • Computer Simulations in Science and Engineering. Concept, Practices, Perspectives.Juan Manuel Durán - 2018 - Springer.
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  • Ethics of the Health-Related Internet of Things: A Narrative Review.Brent Mittelstadt - 2017 - Ethics and Information Technology 19 (3):1-19.
    The internet of things is increasingly spreading into the domain of medical and social care. Internet-enabled devices for monitoring and managing the health and well-being of users outside of traditional medical institutions have rapidly become common tools to support healthcare. Health-related internet of things (H-IoT) technologies increasingly play a key role in health management, for purposes including disease prevention, real-time tele-monitoring of patient’s functions, testing of treatments, fitness and well-being monitoring, medication dispensation, and health research data collection. H-IoT promises many (...)
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  • 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, (...)
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  • 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 (...)
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  • 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 (...)
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  • 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 (...)
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  • 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 (...)
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  • On Some Possible Ramifications of the “Microplastics in Fish” Case.Bor Tang - 2019 - Science and Engineering Ethics 25 (4):1303-1310.
    Cases of research misconduct in the ecological and environmental sciences appear to be relatively rare. A controversial paper published in Science in 2016 documenting the effects of microplastics on the feeding and innate behaviours of fish larvae has recently been retracted, with the authors found guilty of scientific misconduct. In addition to the expected fallout, such as individual and institutional reputational damage from a research misconduct finding, this case has two possibly wider-ranging ramifications. Firstly, there may be a presumptive notion (...)
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  • 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 (...)
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  • 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 (...)
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  • 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 (...)
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  • 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 (...)
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  • 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 (...)
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  • Data as a Cross-Cutting Dimension of Ethical Importance in Direct-to-Consumer Neurotechnologies.Stephen Rainey, Jan Christoph Bublitz, Hannah Maslen & Hannah Thornton - 2019 - American Journal of Bioethics Neuroscience 10 (4):180-182.
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  • “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 (...)
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  • Dissecting the Algorithmic Leviathan: On the Socio-Political Anatomy of Algorithmic Governance.Pascal D. König - forthcoming - Philosophy and Technology:1-19.
    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, (...)
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  • 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 (...)
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  • The Ethics of Biomedical ‘Big Data’ Analytics.Brent Mittelstadt - 2019 - Philosophy and Technology 32 (1):17-21.
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  • 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 (...)
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  • Ethics and Epistemology in Big Data Research.Wendy Lipworth, Paul H. Mason, Ian Kerridge & John P. A. Ioannidis - 2017 - Journal of Bioethical Inquiry 14 (4):489-500.
    Biomedical innovation and translation are increasingly emphasizing research using “big data.” The hope is that big data methods will both speed up research and make its results more applicable to “real-world” patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, (...)
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  • 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 (...)
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