When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule

• Published in: The Journal of clinical ethics Vol. 35; no. 2; p. 85
• Main Authors: McArdle, Edward, Teelin, Karen L, Borschuk, Adrienne, Brown, Amy E Caruso
• Format: Journal Article
• Language: English
• Published: United States 01-06-2024
• Subjects: Access to Information - ethics; Access to Information - legislation & jurisprudence; Adolescent; Child; Confidentiality - ethics; Confidentiality - legislation & jurisprudence; Disclosure - ethics; Disclosure - legislation & jurisprudence; Electronic Health Records - ethics; Electronic Health Records - legislation & jurisprudence; Humans; Male; Parental Consent - ethics; Parental Consent - legislation & jurisprudence; Parents; Patient Rights - legislation & jurisprudence; Personal Autonomy; Privacy - legislation & jurisprudence; United States; United States
• ISSN: 1046-7890
• DOI: 10.1086/729413

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.