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Navigating Ethical Crossroads in Pediatric Ophthalmology.

Regina M Cooper

    Narrative Inquiry in Bioethics
    |November 10, 2025
    PubMed
    Summary

    This case study examines the ethical dilemma of pursuing aggressive glaucoma treatment for an infant when parents, citing personal experience and potential harm, refuse consent. It explores safeguarding parental autonomy versus the child's best interest.

    Area of Science:

    • Ophthalmology
    • Medical Ethics
    • Genetics

    Background:

    • A 10-month-old infant, Baby J, presented with severe congenital glaucoma due to a genetic mutation, characterized by bilateral corneal opacification and elevated intraocular pressure.
    • Despite initial surgeries, her condition remained uncontrolled, with an uncertain visual prognosis and a high risk of permanent blindness without further intervention.

    Purpose of the Study:

    • To analyze the ethical considerations in managing Baby J's severe glaucoma, focusing on the conflict between medical recommendations and parental refusal of consent.
    • To evaluate the case through established ethical frameworks, including the Harm Principle, Best Interest Standard, and Constrained Parental Autonomy, to advocate for safeguarding parental rights.

    Main Methods:

    • Case study analysis of an infant with severe congenital glaucoma.

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  • Application of ethical frameworks: Harm Principle, Best Interest Standard, and Constrained Parental Autonomy.
  • Review of literature on outcomes and complications of glaucoma surgery in infants.

    • Main Results:

    • Baby J's glaucoma proved difficult to manage, with poor outcomes and frequent complications reported in similar cases.
    • Parents, citing personal adverse experiences with blindness and surgical risks, opted against further surgical intervention.
    • A significant ethical conflict arose between the physician's recommendation for potentially sight-preserving surgery and the parents' decision based on perceived harm and autonomy.

    Conclusions:

    • The case highlights the complex ethical challenges in pediatric medicine when parental autonomy clashes with the medical team's assessment of a child's best interest.
    • Advocates for a nuanced approach that respects parental autonomy while ensuring comprehensive assessment of potential harm and benefit, particularly in cases with genetic predispositions.
    • Emphasizes the importance of ethical frameworks in navigating such sensitive decisions to protect both the child's future and the family's rights.