Access and Isolation: Ethical Complexities of Electronic Health Information Portals for Adolescents and Parents

Abstract: In this essay, we explore parent and adolescent commentaries on the complexities surrounding electronic health information (EHI) portals. Recent mandates for patient access to health records complicate the management of adolescent confidentiality and parental oversight. This issue particularly affects adolescents who, for public health reasons, have long been able to access some healthcare services without parental consent, yet still generally depend on parental authority for medical decision-making. The contributions to this issue of Narrative Inquiry in Bioethics highlight the challenges families face with policies that grant adolescents exclusive control of all their health information, often without adequate preparation or support. These accounts reflect frustrations over abrupt access changes, systemic inconsistencies, and a lack of flexibility that fails to consider developmental variations among adolescents. We advocate for a more nuanced approach, balancing confidentiality with the need for parental guidance, and question whether EHI policies prioritize data protection over adolescent well-being.