At the beginning and end of life: theoretical issues arising from the Charlie Gard case

This thesis critically examines the ethical, legal, and philosophical dimensions of the Charlie Gard case, a landmark dispute concerning end-of-life decisions for a severely ill child. Using this case as a focal point, the thesis investigates broader bioethical themes such as neonatal euthanasia, parental autonomy, medical authority, and reproductive ethics. Central to the analysis is the conflict between two foundational bioethical principles: beneficence, advocated by medical professionals, and autonomy, exercised by parents. Within the English legal framework, this conflict is explored through the tension between the best interest of the child and the harm threshold standards. The thesis begins by interrogating who should hold decision-making authority in complex paediatric cases. It then explores evolving bioethical paradigms—such as shifting stances within the American Academy of Pediatrics—that demonstrate growing recognition of parental perspectives while also emphasizing the practical limitations of both beneficence and autonomy in emotionally charged scenarios. Subsequent sections delve into utilitarianism and its implications for end-of-life and reproductive decisions, discussing how the logic of maximizing well-being may justify morally troubling choices. The analysis continues by examining the ethics of saviour siblings, introducing the non-identity problem and exploring harm, benefit, and identity through both person-affecting and impersonal viewpoints. Later parts introduce relational autonomy, the capabilities approach, and liberal utilitarianism as more context-sensitive and ethically inclusive alternatives. Drawing on Rawlsian theory, the thesis ultimately argues for a reasonable disagreement model that frames parents and doctors as epistemic peers, incorporating emotional reasoning and social context to promote more equitable, empathetic, and transparent decision-making in paediatric ethics.