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  1. Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.J. Patrick Woolley, Michelle L. McGowan, Harriet J. A. Teare, Victoria Coathup, Jennifer R. Fishman, Richard A. Settersten, Sigrid Sterckx, Jane Kaye & Eric T. Juengst - 2016 - BMC Medical Ethics 17 (1):1.
    The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...)
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  • Dark Data as the New Challenge for Big Data Science and the Introduction of the Scientific Data Officer.Björn Schembera & Juan M. Durán - 2020 - Philosophy and Technology 33 (1):93-115.
    Many studies in big data focus on the uses of data available to researchers, leaving without treatment data that is on the servers but of which researchers are unaware. We call this dark data, and in this article, we present and discuss it in the context of high-performance computing facilities. To this end, we provide statistics of a major HPC facility in Europe, the High-Performance Computing Center Stuttgart. We also propose a new position tailor-made for coping with dark data and (...)
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  • Dark Data as the New Challenge for Big Data Science and the Introduction of the Scientific Data Officer.Björn Schembera & Juan M. Durán - 2019 - Philosophy and Technology:1-23.
    Many studies in big data focus on the uses of data available to researchers, leaving without treatment data that is on the servers but of which researchers are unaware. We call this dark data, and in this article, we present and discuss it in the context of high-performance computing facilities. To this end, we provide statistics of a major HPC facility in Europe, the High-Performance Computing Center Stuttgart. We also propose a new position tailor-made for coping with dark data and (...)
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  • Ethical Implications with the Utilization of Artificial Intelligence in Dentistry.Neekita Saudagar, Rafia Jabeen, Pallavi Sharma, Sean Mong & Ram M. Vaderhobli - 2021 - Ethics in Biology, Engineering and Medicine 12 (1):161-174.
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  • The Ethics of Biomedical ‘Big Data’ Analytics.Brent Mittelstadt - 2019 - Philosophy and Technology 32 (1):17-21.
  • The ethics of big data: current and foreseeable issues in biomedical contexts.Brent Daniel Mittelstadt & Luciano Floridi - 2016 - Science and Engineering Ethics 22 (2):303–341.
    The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...)
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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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  • Go Big or Go Home: Big Science and ELSI Funding.Roy Meirom, Angelic Shavit, Daniel Ben-Ari, Boaz Yona & Dov Greenbaum - 2016 - American Journal of Bioethics Neuroscience 7 (1):32-34.
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  • 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 (...)
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  • Nuevos escenarios y desafíos para la ciencia abierta. Entre el optimismo y la incertidumbre.Mariano Fressoli & Daniela De Filippo - 2021 - Arbor 197 (799):a586.
    En este artículo ofrecemos una visión sobre los nuevos escenarios que enfrenta la ciencia abierta en un contexto marcado por desafíos micro y macro estructurales que la pandemia de COVID-19 ha puesto de manifiesto. En primer lugar, se describen las políticas en el ámbito del acceso abierto, punta de lanza de la ciencia abierta y las resistencias que todavía encuentran estas prácticas. Se analiza, también, la participación de diferentes actores en los procesos de construcción de conocimiento científico, a través de (...)
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  • Ethical Challenges of Simulation-Driven Big Neuroscience.Markus Christen, Nikola Biller-Andorno, Berit Bringedal, Kevin Grimes, Julian Savulescu & Henrik Walter - 2016 - American Journal of Bioethics Neuroscience 7 (1):5-17.
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  • Research Domain Criteria as Psychiatric Nosology.Faisal Akram & James Giordano - 2017 - Cambridge Quarterly of Healthcare Ethics 26 (4):592-601.
    Abstract:Diagnostic classification systems in psychiatry have continued to rely on clinical phenomenology, despite limitations inherent in that approach. In view of these limitations and recent progress in neuroscience, the National Institute of Mental Health (NIMH) has initiated the Research Domain Criteria (RDoC) project to develop a more neuroscientifically based system of characterizing and classifying psychiatric disorders. The RDoC initiative aims to transform psychiatry into an integrative science of psychopathology in which mental illnesses will be defined as involving putative dysfunctions in (...)
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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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  • 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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  • From Affective Science to Psychiatric Disorder: Ontology as Semantic Bridge.Rasmus Rosenberg Larsen & Janna Hastings - 2018 - Frontiers in Psychiatry 9 (487):1-13.
    Advances in emotion and affective science have yet to translate routinely into psychiatric research and practice. This is unfortunate since emotion and affect are fundamental components of many psychiatric conditions. Rectifying this lack of interdisciplinary integration could thus be a potential avenue for improving psychiatric diagnosis and treatment. In this contribution, we propose and discuss an ontological framework for explicitly capturing the complex interrelations between affective entities and psychiatric disorders, in order to facilitate mapping and integration between affective science and (...)
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