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  1. Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research.Kate Lyle, Susie Weller, Gabby Samuel & Anneke M. Lucassen - 2023 - Journal of Medical Ethics 49 (5):352-356.
    Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused (...)
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  • Clinic, courtroom or (specialist) committee: in the best interests of the critically Ill child?Richard Huxtable - 2018 - Journal of Medical Ethics 44 (7):471-475.
    Law’s processes are likely always to be needed when particularly intractable conflicts arise in relation to the care of a critically ill child like Charlie Gard. Recourse to law has its merits, but it also imposes costs, and the courts’ decisions about the best interests of such children appear to suffer from uncertainty, unpredictability and insufficiency. The insufficiency arises from the courts’ apparent reluctance to enter into the ethical dimensions of such cases. Presuming that such reflection is warranted, this article (...)
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  • Ethical preparedness and developments in genomic healthcare.Bobbie Farsides & Anneke M. Lucassen - forthcoming - Journal of Medical Ethics.
    Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and (...)
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