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  1. Excavating awareness and power in data science: A manifesto for trustworthy pervasive data research.Michael Zimmer, Jessica Vitak, Jacob Metcalf, Casey Fiesler, Matthew J. Bietz, Sarah A. Gilbert, Emanuel Moss & Katie Shilton - 2021 - Big Data and Society 8 (2).
    Frequent public uproar over forms of data science that rely on information about people demonstrates the challenges of defining and demonstrating trustworthy digital data research practices. This paper reviews problems of trustworthiness in what we term pervasive data research: scholarship that relies on the rich information generated about people through digital interaction. We highlight the entwined problems of participant unawareness of such research and the relationship of pervasive data research to corporate datafication and surveillance. We suggest a way forward by (...)
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  • 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...
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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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  • Ethics review of big data research: What should stay and what should be reformed?Effy Vayena, Minerva Rivas Velarde, Mahsa Shabani, Gabrielle Samuel, Camille Nebeker, S. Matthew Liao, Peter Kleist, Walter Karlen, Jeff Kahn, Phoebe Friesen, Bobbie Farsides, Edward S. Dove, Alessandro Blasimme, Mark Sheehan, Marcello Ienca & Agata Ferretti - 2021 - BMC Medical Ethics 22 (1):1-13.
    BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map (...)
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  • Ethics and Values in Design: A Structured Review and Theoretical Critique.Joseph Donia & James A. Shaw - 2021 - Science and Engineering Ethics 27 (5):1-32.
    A variety of approaches have appeared in academic literature and in design practice representing “ethics-first” methods. These approaches typically focus on clarifying the normative dimensions of design, or outlining strategies for explicitly incorporating values into design. While this body of literature has developed considerably over the last 20 years, two themes central to the endeavour of ethics and values in design (E + VID) have yet to be systematically discussed in relation to each other: (a) designer agency, and (b) the (...)
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