House Bill 5547 aims to enhance the genetic privacy of newborn infants in West Virginia by amending existing laws and introducing new provisions. The bill establishes a new article, designated as Article 4G, which includes definitions related to newborn genetic screening and mandates that parental or guardian consent is required before any genetic screening, retention of blood samples, or sharing of test results can occur. It specifies that parents have the right to refuse screening or opt for private testing, and that consent must be informed, voluntary, and separate from general treatment consent. Additionally, the bill requires that the amount of blood drawn for screening be limited to what is necessary and that parents are informed of their rights during pregnancy.

Furthermore, the bill stipulates that blood samples and test results must be destroyed within three weeks unless explicit consent for retention is obtained, and it prohibits the use of these samples and results for any purpose without further consent. The Secretary of Health is tasked with creating a publicly available form for parents to revoke consent for the storage and use of their child's genetic information. The bill also modifies existing language in the Code of West Virginia regarding the responsibilities of healthcare providers in informing parents about genetic testing options for various diseases, ensuring that the focus remains on informed consent and parental rights.

Statutes affected:
Introduced Version: 16-22-3, 16-4G-1, 16-4G-2, 16-4G-3, 16-4G-4, 16-4G-5