Bill > HB3437

This bill establishes comprehensive protections for newborn genetic privacy by requiring explicit, separate written consent from parents or guardians for several key actions related to newborn genetic screening. The bill defines "newborn screening" as a public health procedure for screening infants shortly after birth for treatable conditions, and defines "blood spots" as blood samples collected on filter paper from newborns. It mandates that parents must voluntarily provide express written consent before any genetic screening can be performed, and this consent cannot be a general treatment consent form. The bill limits the amount of blood that can be drawn to only what is necessary for screening and requires that blood spots and screening test results be destroyed within three weeks unless specific consent for retention is obtained. Furthermore, even if parents consent to retain blood spots or test results, additional consent is required for any subsequent use of these materials, including for research, forensics, or other purposes. The consent forms must be written in clear, non-threatening language, and parents can refuse screening or choose private screening. The bill emphasizes that these consent requirements cannot be waived or superseded by other regulations, providing strong protections for newborn genetic privacy.

Health and Social Services

http://www.wvlegislature.gov/Bill_Status/Bills_history.cfm?input=3437&year=2025&sessiontype=RS&btype=bill