House Bill 3437 aims to enhance the genetic privacy of newborn infants in West Virginia by establishing a new article in the state code that outlines specific requirements for parental consent regarding newborn genetic screening. The bill mandates that health care facilities and providers must obtain express, separate, written, voluntary, and informed consent from parents or guardians before conducting any genetic screening on newborns. Additionally, it limits the amount of blood that can be collected for screening purposes and stipulates that blood samples and test results must be destroyed within three weeks unless consent for retention is granted.

Furthermore, the bill emphasizes that any retention, sharing, or use of newborn blood spots and genetic screening test results requires explicit consent from the parents or guardians. It prohibits the dissemination or use of these samples and results for research, law enforcement, or other purposes without proper consent. The language of the consent forms must be clear and non-threatening, ensuring that parents are fully informed of their rights. Overall, the bill seeks to protect the genetic privacy of newborns by ensuring that parental consent is a fundamental requirement in the screening process.

Statutes affected:
Introduced Version: 16-4G-1, 16-4G-2, 16-4G-3, 16-4G-4