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  1.  42
    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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  2.  47
    Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent.J. Patrick 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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    Kaufman's Debt to Kant: The Epistemological Importance of the “Structure of the World Which Environs Us”.J. Patrick Woolley - 2013 - Zygon 48 (3):544-564.
    Gordon Kaufman's “constructive theology” can easily be taken out of context and misunderstood or misrepresented as a denial of God. It is too easily overlooked that in his approach everything is an imaginary construct given no immediate ontological status—the self, the world, and God are “products of the imagination.” This reflects an influence, not only of theories on linguistic and cultural relativism, but also of Kant's “ideas of pure reason.” Kaufman is explicit about this debt to Kant. But I argue (...)
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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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