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  1.  32
    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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    Challenges and opportunities for ELSI early career researchers.Jessica Bell, Mirko Ancillotti, Victoria Coathup, Sarah Coy, Tessel Rigter, Travis Tatum, Jasjote Grewal, Faruk Berat Akcesme, Jovana Brkić, Anida Causevic-Ramosevac, Goran Milovanovic, Marianna Nobile, Cristiana Pavlidis, Teresa Finlay & Jane Kaye - 2016 - BMC Medical Ethics 17 (1):1.
    Over the past 25 years, there has been growing recognition of the importance of studying the Ethical, Legal and Social Implications of genetic and genomic research. A large investment into ELSI research from the National Institutes of Health Human Genomic Project budget in 1990 stimulated the growth of this emerging field; ELSI research has continued to develop and is starting to emerge as a field in its own right. The evolving subject matter of ELSI research continues to raise new research (...)
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    Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.Victoria Coathup, Harriet J. A. Teare, Jusaku Minari, Go Yoshizawa, Jane Kaye, Masanori P. Takahashi & Kazuto Kato - 2016 - BMC Medical Ethics 17 (1):51.
    As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform (...)
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