21 found
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  1.  35
    Beyond Individualism: Is There a Place for Relational Autonomy in Clinical Practice and Research?Edward S. Dove, Susan E. Kelly, Federica Lucivero, Mavis Machirori, Sandi Dheensa & Barbara Prainsack - 2017 - Clinical Ethics 12 (3):150-165.
    The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...)
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  2.  16
    Familial Genetic Risks: How Can We Better Navigate Patient Confidentiality and Appropriate Risk Disclosure to Relatives?Edward S. Dove, Vicky Chico, Michael Fay, Graeme Laurie, Anneke M. Lucassen & Emily Postan - 2019 - Journal of Medical Ethics 45 (8):504-507.
    This article investigates a high-profile and ongoing dilemma for healthcare professionals, namely whether the existence of a duty of care to genetic relatives of a patient is a help or a hindrance in deciding what to do in cases where a patient’s genetic information may have relevance to the health of the patient’s family members. The English case ABC v St George’s Healthcare NHS Trust and others considered if a duty of confidentiality owed to the patient and a putative duty (...)
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  3.  9
    The EU General Data Protection Regulation: Implications for International Scientific Research in the Digital Era.Edward S. Dove - 2018 - Journal of Law, Medicine and Ethics 46 (4):1013-1030.
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  4.  6
    Charting Regulatory Stewardship in Health Research: Making the Invisible Visible.Graeme T. Laurie, Edward S. Dove, Agomoni Ganguli-Mitra, Isabel Fletcher, Catriona Mcmillan, Nayha Sethi & Annie Sorbie - 2018 - Cambridge Quarterly of Healthcare Ethics 27 (2):333-347.
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  5.  16
    Reconfiguring Social Value in Health Research Through the Lens of Liminality.Agomoni Ganguli‐Mitra, Edward S. Dove, Graeme T. Laurie & Samuel Taylor‐Alexander - 2017 - Bioethics 31 (2):87-96.
    Despite the growing importance of ‘social value’ as a central feature of research ethics, the term remains both conceptually vague and to a certain extent operationally rigid. And yet, perhaps because the rhetorical appeal of social value appears immediate and self-evident, the concept has not been put to rigorous investigation in terms of its definition, strength, function, and scope. In this article, we discuss how the anthropological concept of liminality can illuminate social value and differentiate and reconfigure its variegated approaches. (...)
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  6.  8
    Expert Perspectives on Ethics Review of International Data-Intensive Research: Working Towards Mutual Recognition.Edward S. Dove & Chiara Garattini - 2018 - Research Ethics 14 (1):1-25.
    Life sciences research is increasingly international and data-intensive. Researchers work in multi-jurisdictional teams or formally established research consortia to exchange data and conduct research using computation of multiple sources and volumes of data at multiple sites and through multiple pathways. Despite the internationalization and data intensification of research, the same ethics review process as applies to single-site studies in one country tends to apply to multi-site studies in multiple countries. Because of the standard requirement for multi-jurisdictional or multi-site ethics review, (...)
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  7.  6
    Requiring a Single IRB for Cooperative Research in the Revised Common Rule: What Lessons Can Be Learned From the UK and Elsewhere?Edward S. Dove - 2019 - Journal of Law, Medicine and Ethics 47 (2):264-282.
    This article argues in general support of the sIRB rule, but also draws on recent empirical research to highlight several residual weaknesses in the US regulatory structure for research ethics review, and suggests ways in which these weaknesses might be addressed in future regulatory reforms to improve upon the sIRB rule.
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  8.  12
    Fail to Prepare and You Prepare to Fail: The Human Rights Consequences of the UK Government’s Inaction During the COVID-19 Pandemic.Rhiannon Frowde, Edward S. Dove & Graeme T. Laurie - 2020 - Asian Bioethics Review 12 (4):459-480.
    As the sustained and devastating extent of the coronavirus disease 2019 pandemic becomes apparent, a key focus of public scrutiny in the UK has centred on the novel legal and regulatory measures introduced in response to the virus. When those measures were first implemented in March 2020 by the UK Government, it was thought that human rights obligations would limit excesses of governmental action and that the public had more to fear from unwarranted intrusion into civil liberties. However, within the (...)
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  9.  11
    Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework.Edward S. Dove - 2015 - Journal of Law, Medicine and Ethics 43 (4):675-689.
    Spurred by a confluence of factors, most notably the decreasing cost of high-throughput technologies and advances in information technologies, a number of population research initiatives have emerged in recent years. These include large-scale, internationally collaborative genomic projects and biobanks, the latter of which can be defined as an organized collection of human biological material and associated data stored for one or more research purposes. Biobanks are a key emerging research infrastructure, and those established as prospective research resources comprising biospecimens and (...)
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  10.  12
    Criminal Prohibition of Wrongful Re‑Identification: Legal Solution or Minefield for Big Data?Mark Phillips, Edward S. Dove & Bartha M. Knoppers - 2017 - Journal of Bioethical Inquiry 14 (4):527-539.
    The collapse of confidence in anonymization as a robust approach for preserving the privacy of personal data has incited an outpouring of new approaches that aim to fill the resulting trifecta of technical, organizational, and regulatory privacy gaps left in its wake. In the latter category, and in large part due to the growth of Big Data–driven biomedical research, falls a growing chorus of calls for criminal and penal offences to sanction wrongful re-identification of “anonymized” data. This chorus cuts across (...)
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  11.  3
    To What Extent Does the EU General Data Protection Regulation (GDPR) Apply to Citizen Scientist-Led Health Research with Mobile Devices?Edward S. Dove & Jiahong Chen - 2020 - Journal of Law, Medicine and Ethics 48 (S1):187-195.
    In this article, we consider the possible application of the European General Data Protection Regulation to “citizen scientist”-led health research with mobile devices. We argue that the GDPR likely does cover this activity, depending on the specific context and the territorial scope. Remaining open questions that result from our analysis lead us to call for lex specialis that would provide greater clarity and certainty regarding the processing of health data by for research purposes, including these non-traditional researchers.
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  12.  7
    The sIRB System: A Single Beacon of Progress in the Revised Common Rule?Vasiliki Rahimzadeh, Edward S. Dove & Bartha Maria Knoppers - 2017 - American Journal of Bioethics 17 (7):43-46.
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  13.  48
    Emerging Issues in Paediatric Health Research Consent Forms in Canada: Working Towards Best Practices. [REVIEW]Edward S. Dove, Denise Avard, Lee Black & Bartha M. Knoppers - 2013 - BMC Medical Ethics 14 (1):1-10.
    BackgroundObtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about how paediatric consent operates in practice to accord with current and emerging legal and socio-ethical issues, norms, and requirements.MethodsEmploying a qualitative thematic content analysis, we examined paediatric consent forms from major academic centres and public organisations across Canada dated from 2008–2011, which were purposively selected to reflect different types of research ethics boards, participants, and (...)
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  14.  15
    Glocal Bioethics: When International IRB Collaboration Confronts Local Politics.Edward S. Dove & Vural Özdemir - 2014 - American Journal of Bioethics 14 (5):20-23.
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  15.  30
    Review of Calvin Wai-Loon Ho, Juridification in Bioethics: Governance of Human Pluripotent Cell Research. [REVIEW]Edward S. Dove - 2017 - American Journal of Bioethics 17 (11):W12-W13.
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  16.  4
    Co-production and Managing Uncertainty in Health Research Regulation: A Delphi Study.Isabel Fletcher, Stanislav Birko, Edward S. Dove, Graeme T. Laurie, Catriona McMillan, Emily Postan, Nayha Sethi & Annie Sorbie - 2020 - Health Care Analysis 28 (2):99-120.
    European and international regulation of human health research is typified by a morass of interconnecting laws, diverse and divergent ethical frameworks, and national and transnational standards. There is also a tendency for legislators to regulate in silos—that is, in discrete fields of scientific activity without due regard to the need to make new knowledge as generalisable as possible. There are myriad challenges for the stakeholders—researchers and regulators alike—who attempt to navigate these landscapes. This Delphi study was undertaken in order to (...)
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  17.  7
    Demystifying Biobanks.Bartha M. Knoppers, Edward S. Dove & Ma'N. H. Zawati - 2013 - Hastings Center Report 43 (5):4-5.
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  18.  18
    Are We Asking the Right Ethics Questions on Drug Shortages? Suggestions for a Global and Anticipatory Ethics Framework.Vural Ozdemir, Yann Joly, Edward S. Dove, Aspasia Karalis, Denise Avard & Bartha M. Knoppers - 2012 - American Journal of Bioethics 12 (1):13 - 15.
    The American Journal of Bioethics, Volume 12, Issue 1, Page 13-15, January 2012.
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  19.  1
    Broad Consent for Future Research: International Perspectives.Mark A. Rothstein, Heather L. Harrell, Katie M. Saulnier, Edward S. Dove, Chien Te Fan, Tzu-Hsun Hung, Obiajulu Nnamuchi, Alexandra Obadia, Gil Siegal & Bartha Maria Knoppers - 2018 - IRB: Ethics & Human Research 40 (6):7-12.
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  20.  7
    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 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 these (...)
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  21.  10
    A Code of Ethics for Ethicists: What Would Pierre Bourdieu Say? “Do Not Misuse Social Capital in the Age of Consortia Ethics”.Vural Özdemir, Hakan Kılıç, Arif Yıldırım, Effy Vayena, Edward S. Dove, Kıvanç Güngör, Adrian LLerena & Semra Şardaş - 2015 - American Journal of Bioethics 15 (5):64-67.