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  1.  47
    Country Reports.Ma'N. H. Zawati, Don Chalmers, Sueli G. Dallari, Marina de Neiva Borba, Miriam Pinkesz, Yann Joly, Haidan Chen, Mette Hartlev, Liis Leitsalu, Sirpa Soini, Emmanuelle Rial-Sebbag, Nils Hoppe, Tina Garani-Papadatos, Panagiotis Vidalis, Krishna Ravi Srinivas, Gil Siegal, Stefania Negri, Ryoko Hatanaka, Maysa Al-Hussaini, Amal Al-Tabba', Lourdes Motta-Murgía, Laura Estela Torres Moran, Aart Hendriks, Obiajulu Nnamuchi, Rosario Isasi, Dorota Krekora-Zajac, Eman Sadoun, Calvin Ho, Pamela Andanda, Won Bok Lee, Pilar Nicolás, Titti Mattsson, Vladislava Talanova, Alexandre Dosch, Dominique Sprumont, Chien-Te Fan, Tzu-Hsun Hung, Jane Kaye, Andelka Phillips, Heather Gowans, Nisha Shah & James W. Hazel - 2019 - Journal of Law, Medicine and Ethics 47 (4):582-704.
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  2.  29
    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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  3.  25
    Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
    BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...)
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  4.  1
    Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.Megan Prictor, Sharon Huebner, Harriet J. A. Teare, Luke Burchill & Jane Kaye - 2020 - Journal of Law, Medicine and Ethics 48 (1):205-217.
    Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...)
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  5.  16
    Ethical Implications of the Use of Whole Genome Methods in Medical Research.Jane Kaye, Paula Boddington, Jantina de Vries, Naomi Hawkins & Karen Melham - unknown
    The use of genome-wide association studies in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a (...)
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  6.  47
    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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  7. Governing Biobanks: Understanding the Interplay Between Law and Practice.Jane Kaye (ed.) - 2012 - Hart.
  8.  11
    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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  9.  8
    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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  10.  9
    Challenges and Opportunities for ELSI Early Career Researchers.Mirko Ancillotti Jessica Bell, Sarah Coy Victoria Coathup, Travis Tatum Tessel Rigter, Faruk Berat Akcesme Jasjote Grewal, Anida Causevic-Ramosevac Jovana Brkić, Marianna Nobile Goran Milovanovic, Teresa Finlay Cristiana Pavlidis & Jane Kaye - forthcoming - Most Recent Articles: Bmc Medical Ethics.
    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...
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  11.  12
    ‘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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  12.  11
    Personalized assent for pediatric biobanks.Noor A. A. Giesbertz, Karen Melham, Jane Kaye, Johannes J. M. van Delden & Annelien L. Bredenoord - 2016 - BMC Medical Ethics 17 (1):59.
    Pediatric biobanking is considered important for generating biomedical knowledge and improving health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent (...)
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  13.  2
    Biobank Report: United Kingdom.Jane Kaye, Jessica Bell, Linda Briceno & Colin Mitchell - 2016 - Journal of Law, Medicine and Ethics 44 (1):96-105.
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