11 found
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  1.  8
    Ethical preparedness in genomic medicine: how NHS clinical scientists navigate ethical issues.Kate Sahan, Kate Lyle, Helena Carley, Nina Hallowell, Michael J. Parker & Anneke M. Lucassen - forthcoming - Journal of Medical Ethics.
    Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such as guidance and deliberative ethics forums, developed primarily to manage issues arising within the clinic.We explore (...)
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  2.  21
    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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  3.  11
    Focusing attention on physicians’ climate-related duties may risk missing the bigger picture: towards a systems approach to health and climate.Gabby Samuel, Sarah Briggs, Faranak Hardcastle, Kate Lyle, Emily Parker & Anneke M. Lucassen - forthcoming - Journal of Medical Ethics.
    Gils-Schmidt and Salloch recognise that human and climate health are inextricably linked, and that mitigating healthcare-associated climate harms is essential for protecting human health.1 They argue that physicians have a duty to consider how their own practices contribute to climate change, including during their interactions with patients. Acknowledging the potential for conflicts between this duty and the provision of individual patient care, they propose the application of Korsgaard’s neo-Kantian account of practical identities to help navigate such scenarios. In this commentary, (...)
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  4.  44
    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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  5.  21
    Is it acceptable to contact an anonymous egg donor to facilitate diagnostic genetic testing for the donor-conceived child?Rachel Horton, Benjamin Bell, Angela Fenwick & Anneke M. Lucassen - 2019 - Journal of Medical Ethics 45 (6):357-360.
    We discuss a case where medically optimal investigations of health problems in a donor-conceived child would require their egg donor to participate in genetic testing. We argue that it would be justified to contact the egg donor to ask whether she would consider this, despite her indicating on a historical consent form that she did not wish to take part in future research and that she did not wish to be informed if she was found to be a carrier of (...)
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  6.  10
    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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  7.  23
    The moral argument for heritable genome editing requires an inappropriately deterministic view of genetics.Rachel Horton & Anneke M. Lucassen - 2019 - Journal of Medical Ethics 45 (8):526-527.
    Gyngell and colleagues consider that the recent Nuffield Council report does not go far enough: heritable genome editing is not just justifiable in a few rare cases; instead, there is a moral imperative to undertake it. We agree that there is a moral argument for this, but in the real world it is mitigated by the fact that it is not usually possible to ensure a better life. We suggest that a moral imperative for HGE can currently only be concluded (...)
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  8.  5
    Discussion of off-target and tentative genomic findings may sometimes be necessary to allow evaluation of their clinical significance.Rachel H. Horton, William L. Macken, Robert D. S. Pitceathly & Anneke M. Lucassen - 2024 - Journal of Medical Ethics 50 (5):295-298.
    We discuss a case where clinical genomic investigation of muscle weakness unexpectedly found a genetic variant that might (or might not) predispose to kidney cancer. We argue that despite its off-target and uncertain nature, this variant should be discussed with the man who had the test, not because it is medical information, but because this discussion would allow the further clinical evaluation that might lead it to becoming so. We argue that while prominent ethical debates around genomics often take ‘results’ (...)
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  9.  14
    Old consent and new developments: health professionals should ask and not presume.Rachel Horton, Angela Fenwick & Anneke M. Lucassen - 2020 - Journal of Medical Ethics 46 (6):412-413.
    We thank Lucy Frith for her thought-provoking response1 to our paper, where we argued that it would be ethically acceptable to contact an anonymous egg donor to help facilitate diagnostic genetic testing for a donor-conceived child.2 While we read Frith’s commentary with interest, we still think that the egg donor should be contacted in the case that we describe. Frith raises concerns as to whether contact would constitute ‘ overriding consent ’, thus ’ potentially set a dangerous precedent ’ for (...)
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  10.  15
    Using a biomarker acutely to identify babies at risk of serious adverse effects from antibiotics: where is the ‘Terrible Moral and Medical Dilemma’?Anneke M. Lucassen, John Henry McDermott & William Newman - 2021 - Journal of Medical Ethics 47 (2):117-118.
    We thank Parker and Wright for engaging in this roundtable debate in such a spirited way. The ‘Pharmacogenetic [test] to Avoid Loss of Hearing’ Trial is the first time a genetic point of care test has been applied in the acute neonatal setting; therefore, it is not surprising that questions have been raised which require debate, discussion and clarification. Parker and Wright misattribute several assumptions to the roundtable authors, which we would like to clarify here. Since they raise wider questions (...)
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  11.  38
    Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project. [REVIEW]Sandi Dheensa, Gabrielle Samuel, Anneke M. Lucassen & Bobbie Farsides - 2018 - Journal of Medical Ethics 44 (6):397-403.
    Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional (...)
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