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The field of paediatric neurology has evolved considerably in parallel with enhanced longevity, advances in technology and changes in cultural perception. New concepts have been promoted with respect to health, functioning, quality of life and legal rights. This has seen the development of novel approaches to the child in society, disease, disability, professional-family relationship and the role of the paediatric neurologist, associated with enhanced responsibility. This changing climate has also led to increasing recognition of ethical situations including in terms of uncertainty of diagnosis and prognosis, harmonising the goals of medical care, decision-making, evidence-informed practice, research, and developing partnerships with families and young people with neurological impairments as well as with colleagues. The principles of bioethics, namely autonomy, beneficence, non-maleficence and justice, apply with particular resonance in paediatric neurology. Together with a relational and contextual approach, they help in identifying and addressing ethical issues pertaining to daily (clinical) life and in revisiting the interface between good clinical practice and ethical practice as an empathic experience. These areas should inform further development, concepts, and content of the field.
An early version of this paper was presented as a keynote lecture at the 14th International Child Neurology Congress “Bridging Worlds; Child Neurology from a Global Perspective” in 2016 in Amsterdam, the Netherlands.
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