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  1. 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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  • From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
    The development and use of large and dynamic health data repositories designed to support research pose challenges to traditional informed consent models. We used semi-structured interviewing to elicit diverse research stakeholders' views of a model of consent appropriate to participation in initiatives that entail collection, long-term storage, and undetermined future research use of multiple types of health data. We demonstrate that, when considering health data repositories, research stakeholders replace a concept of consent as informed with one in which consent is (...)
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  • 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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  • Research and Global Health Emergencies: On the Essential Role of Best Practice.Nayha Sethi - 2018 - Public Health Ethics 11 (3):237-250.
    This article addresses an important, overlooked regulatory challenge during global health emergencies. It provides novel insights into how, and why, best practice can support decision makers in interpreting and implementing key guidance on conducting research during GHEs. The ability to conduct research before, during and after such events is crucial. The recent West-African Ebola outbreaks and the Zika virus have highlighted considerable room for improvement in meeting the imperative to research and rapidly develop effective therapies. A means of effectively capturing (...)
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  • What Does It Mean to Take an Ethics+ Approach to Global Biobank Governance?Graeme Laurie - 2017 - Asian Bioethics Review 9 (4):285-300.
    This article re-examines and fundamentally re-assesses the symbiotic relationship between law and ethics in the governance and regulation of biobanks as a global phenomenon. Set against the two decades of experience of set-up, management and most recently granting access to biobanks to promote advances in human health, it is argued that the boundaries—and so the legitimacy—of the respective roles of ethics and law have become blurred and, potentially, blunted. The caricature of law as a tool of command and control—resulting in (...)
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  • The Perfect Moral Storm: Diverse Ethical Considerations in the COVID-19 Pandemic.Vicki Xafis, G. Owen Schaefer, Markus K. Labude, Yujia Zhu & Li Yan Hsu - 2020 - Asian Bioethics Review 12 (2):65-83.
    The COVID-19 pandemic has both exposed and created deep rifts in society. It has thrust us into deep ethical thinking to help justify the difficult decisions many will be called upon to make and to protect from decisions that lack ethical underpinnings. This paper aims to highlight ethical issues in six different areas of life highlighting the enormity of the task we are faced with globally. In the context of COVID-19, we consider health inequity, dilemmas in triage and allocation of (...)
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