Utah Enacts First-in-Nation Law Requiring Parental Consent for Newborn DNA Storage

Utah has enacted a pioneering law, HB 363, that mandates parental consent before newborn DNA samples can be stored or used for research purposes. This legislation requires the Utah Department of Health and Human Services to obtain written permission from parents before retaining a child’s blood sample beyond the initial newborn screening. If consent is not provided, the sample must be destroyed after testing is completed.

The new policy addresses concerns about the unauthorized retention and use of newborn DNA, which has been a subject of legal challenges in several states. For instance, the New Jersey Department of Health recently reduced its DNA retention period from 23 years to two years amid ongoing litigation. These developments reflect increasing scrutiny over state practices related to genetic data storage and usage.

Prior to this law, Utah allowed newborn DNA samples to be stored for over 90 days and classified them as state laboratory property. HB 363 effectively ends automatic storage and usage by reinstating parental control over genetic information. This change highlights a broader national discussion about privacy, consent, and genetic data management within public health systems.

The Citizens’ Council for Health Freedom (CCHF), which supports the legislation, emphasizes that DNA is a critical personal identifier and that consent is essential to protect individuals from lifelong genetic surveillance. CCHF monitors state policies on newborn DNA storage and advocates for similar consent-based approaches nationwide.

The enactment of HB 363 positions Utah as a leader in newborn genetic data regulation, prompting calls for other states to adopt comparable consent requirements to enhance privacy protections. This legislative shift underscores the evolving intersection of healthcare, privacy law, and genetic data governance in the United States.