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  1.  56
    Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.Don Chalmers, Dianne Nicol, Jane Kaye, Jessica Bell, Alastair V. Campbell, Calvin W. L. Ho, Kazuto Kato, Jusaku Minari, Chih-Hsing Ho, Colin Mitchell, Fruzsina Molnár-Gábor, Margaret Otlowski, Daniel Thiel, Stephanie M. Fullerton & Tess Whitton - 2016 - BMC Medical Ethics 17 (1):1.
    _BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...)
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  2.  13
    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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  3.  13
    ‘Pop-Up’ Governance: Developing Internal Governance Frameworks for Consortia: The Example of UK10K.Jessica Bell, Karen Kennedy, Carol Smee, Dawn Muddyman & Jane Kaye - 2015 - Life Sciences, Society and Policy 11 (1):1-17.
    Innovations in information technologies have facilitated the development of new styles of research networks and forms of governance. This is evident in genomics where increasingly, research is carried out by large, interdisciplinary consortia focussing on a specific research endeavour. The UK10K project is an example of a human genomics consortium funded to provide insights into the genomics of rare conditions, and establish a community resource from generated sequence data. To achieve its objectives according to the agreed timetable, the UK10K project (...)
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  4.  2
    Biobank Report: United Kingdom.Jane Kaye, Jessica Bell, Linda Briceno & Colin Mitchell - 2016 - Journal of Law, Medicine and Ethics 44 (1):96-105.
    The United Kingdom is a leader in genomics research, and the presence of numerous types of biobanks and the linking of health data and research within the UK evidences the importance of biobank-based research in the UK. There is no biobank-specific law in the UK and research on biobank materials is governed by a confusing set of statutory law, common law, regulations, and guidance documents. Several layers of applicable law, from European to local, further complicate an understanding of privacy protections. (...)
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  5.  47
    There Is No Wild.Jessica Bell - 2015 - Society and Animals 23 (5):462-483.
    This paper documents the discourse used by contemporary circuses to justify their exploitation of nonhuman animals. The circus is undergoing redefinition due to cultural changes, animal welfare concerns, and political legislation. Critical Discourse Analysis is applied to a sample of articles on animals in circuses published inusnewspapers and magazines from 2007 to 2012. Analyses revealed that circus discourse attempts to promote the circus as an ecologically important endeavor, minimize the differences between human and nonhuman animals, naturalize culturally induced behavior, assert (...)
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    Public Involvement in the Governance of Population-Level Biomedical Research: Unresolved Questions and Future Directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - forthcoming - Journal of Medical Ethics:medethics-2020-106530.
    Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...)
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