Abstract Utah’s 2025 change in dried blood spot (DBS) retention policy requires parental consent for long-term storage, citing data privacy concerns. While this shift enhances parental control, it restricts retrospective diagnosis of congenital cytomegalovirus (cCMV), the leading cause of non-genetic sensorineural hearing loss (SNHL), and a major contributor to neurodevelopmental impairment, with a prevalence of one in every 200 births. Without long-term DBS storage, infants with late-onset cCMV may lose the opportunity for diagnosis and connection to treatment and developmental resources. Furthermore, families may lose the opportunity for an answer. Drawing on Utah’s legislative history, public health ethics, and experiences from other states, this policy analysis argues that data privacy and biospecimen retention are not mutually exclusive. States should consider long-term DBS retention and data protection policies, alongside education, to preserve the positive impacts of retrospective testing for cCMV.
Tempero et al. (Sun,) studied this question.