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  1. The role of bioethics services in paediatric intensive care units: a qualitative descriptive study.Denise Alexander, Mary Quirke, Jo Greene, Lorna Cassidy, Carol Hilliard & Maria Brenner - 2024 - BMC Medical Ethics 25 (1):1-12.
    Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members (...)
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  • Good enough? Parental decisions to use DIY looping technology to manage type 1 diabetes in children.Carolyn Johnston - 2021 - Monash Bioethics Review 39 (Suppl 1):26-41.
    People are using innovative internet of things technologies to gain individualised management of their type 1 diabetes. The #WeAreNotWaiting movement supports them to build their own hybrid closed loop systems and access their real time blood sugar data via any web connected device. A small number of parents in Australia use such DIY looping systems to manage their child’s type 1 diabetes, but these systems have not been approved by the Therapeutic Goods Administration in Australia, creating ethical dilemmas for clinicians (...)
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  • The theorisation of ‘best interests’ in bioethical accounts of decision-making.Giles Birchley - 2021 - BMC Medical Ethics 22 (1):1-18.
    Background Best interests is a ubiquitous principle in medical policy and practice, informing the treatment of both children and adults. Yet theory underlying the concept of best interests is unclear and rarely articulated. This paper examines bioethical literature for theoretical accounts of best interests to gain a better sense of the meanings and underlying philosophy that structure understandings. Methods A scoping review of was undertaken. Following a literature search, 57 sources were selected and analysed using the thematic method. Results Three (...)
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  • The child's right to bodily integrity and autonomy: A conceptual analysis.Jonathan Pugh - forthcoming - Clinical Ethics.
    It is widely accepted that children enjoy some form of a right to bodily integrity. However, there is little agreement about the precise nature and scope of this right. This paper offers a conceptual analysis of the child's right to bodily integrity, in order to further elucidate the relationship between the child's right to bodily integrity and considerations of autonomy. Following a discussion of Leif Wenar's work on the structure and justification of rights, I first explain how the adult's right (...)
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  • Conflicts between parents and clinicians: Tracheotomy decisions and clinical bioethics consultation.Kristi Klee, Benjamin Wilfond, Karen Thomas & Debra Ridling - 2022 - Nursing Ethics 29 (3):685-695.
    Background: The parent of a child with profound cognitive disability will have complex decisions to consider throughout the life of their child. An especially complex decision is whether to place a tracheotomy to support the child’s airway. The decision may involve the parent wanting a tracheotomy and the clinician advising against this intervention or the clinician recommending a tracheotomy while the parent is opposed to the intervention. This conflict over what is best for the child may lead to a bioethics (...)
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  • Consent for rapid genomic sequencing for critically ill children: legal and ethical issues.Danya Vears, Zornitza Stark, Fiona Lynch & Christopher Gyngell - 2021 - Monash Bioethics Review 39 (Suppl 1):117-129.
    Although rapid genomic sequencing (RGS) is improving care for critically ill children with rare disease, it also raises important ethical questions that need to be explored as its use becomes more widespread. Two such questions relate to the degree of consent that should be required for RGS to proceed and whether it might ever be appropriate to override parents’ decisions not to allow RGS to be performed in their critically ill child. To explore these questions, we first examine the legal (...)
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  • Decolonizing health care: Challenges of cultural and epistemic pluralism in medical decision-making with Indigenous communities.Sara Marie Cohen-Fournier, Gregory Brass & Laurence J. Kirmayer - 2021 - Bioethics 35 (8):767-778.
    The Truth and Reconciliation Commission of Canada made it clear that understanding the historical, social, cultural, and political landscape that shapes the relationships between Indigenous peoples and social institutions, including the health care system, is crucial to achieving social justice. How to translate this recognition into more equitable health policy and practice remains a challenge. In particular, there is limited understanding of ways to respond to situations in which conventional practices mandated by the state and regulated by its legal apparatus (...)
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  • Clinical ethics case consultation in a university department of cardiology and intensive care: a descriptive evaluation of consultation protocols.Michel Noutsias, Daniel Sedding, Jochen Dutzmann, Henning Rosenau, Kim P. Linoh, Nicolas Heirich, Stephan Nadolny, Jan Schildmann & Andre Nowak - 2021 - BMC Medical Ethics 22 (1):1-12.
    BackgroundClinical ethics case consultations (CECCs) provide a structured approach in situations of ethical uncertainty or conflicts. There have been increasing calls in recent years to assess the quality of CECCs by means of empirical research. This study provides detailed data of a descriptive quantitative and qualitative evaluation of a CECC service in a department of cardiology and intensive care at a German university hospital.MethodsSemi-structured document analysis of CECCs was conducted in the period of November 1, 2018, to May 31, 2020. (...)
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  • A step too far or a step in the wrong direction? A critique of the 2014 Amendment to the Belgian Euthanasia Act.Joanna Murdoch - 2021 - Monash Bioethics Review 39 (Suppl 1):103-116.
    In 2014, Article 3 of the the Belgian Euthanasia Act (2002) (the Euthanasia Act) was amended (‘the Amendment’) to include the ‘capacity for discernment’ requirement. This paper explores the implications of this highly controversial Amendment. I remain unconvinced of the benefits for children < 12 years old suffering chronic or terminal illnesses. In Part One, I argue that the phrase ‘capacity for discernment’ is problematic and vulnerable to abuse; neither a consistent, widely accepted definition of the phrase has been established (...)
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  • Of the Rights and Best Interests of Future Generations.Erika Kleiderman, Minh Thu Nguyen & Bartha Maria Knoppers - 2020 - American Journal of Bioethics 20 (8):38-40.
    Volume 20, Issue 8, August 2020, Page 38-40.
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  • Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit.Jenny Kingsley, Jonna Clark, Mithya Lewis-Newby, Denise Marie Dudzinski & Douglas Diekema - forthcoming - Journal of Medical Ethics.
    Families and clinicians approaching a child’s death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child’s best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician’s primary ethical duty to the paediatric patient. This approach does (...)
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  • Three scenarios illustrating ethical concerns when considering bariatric surgery in obese adolescents with Prader-Willi syndrome.Maria Luisa Di Pietro & Drieda Zaçe - 2020 - Journal of Medical Ethics 46 (11):738-742.
    Prader-Willi syndrome (PWS) is one of the 25 syndromic forms of obesity, in which patients present—in addition to different degrees of obesity—intellectual disability, endocrine disturbs, hyperphagia and/or other signs of hypothalamic dysfunction. In front of a severe/extreme obesity and the failure of non-invasive treatments, bariatric surgery is proposed as a therapeutic option. The complexity of the clinical condition, which could affect the long-term effects of bariatric surgery, and the frequent association with a mild to severe intellectual disability raise some ethical (...)
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  • Shared decision making, prospektive Lebensqualität und das beste Interesse des Kindes: ethische Herausforderungen im Kontext von Behandlungsentscheidungen bei Frühgeborenen an der Grenze der Lebensfähigkeit.Diana Carvalho & Nadia Primc - 2023 - Ethik in der Medizin 35 (4):487-506.
    Zusammenfassung Behandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (SDM) favorisiert, die (...)
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  • Not Society’s Sacrificial Lambs: It is Wrong to Withhold Vaccination from Children to Benefit Others.Johan C. Bester - 2020 - American Journal of Bioethics 20 (9):81-83.
    Malm and Navin (2020) argue that it is wrong to withhold varicella vaccine from children to let wild virus circulate purely to prevent zoster in older adults. They demonstrate how this practice acc...
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  • When All the PICU’s a Platform.Jacob M. Appel - 2021 - American Journal of Bioethics 21 (7):75-77.
    The Internet has vastly expanded the opportunity for patients and families to share their medical narratives with the general public. Yet blogs and social media posts can also prove a source of con...
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