West Virginia legislation · 2025 Regular Session
West Virginia HB3437: To Protect Newborn Genetic Privacy Rights
Status: Introduced, March 17, 2025
The purpose of this bill is to require the express consent of a parent or guardian to conduct a genetic screening of a newborn infant, to retain blood samples from the infant, and to retain and share results of the genetic screening of the infant.
What the bill says
To amend the Code of West Virginia, 1931, as amended, by adding thereto a new article, designated §16-4G-1, §16-4G-2, §16-4G-3, and §16-4G-4, all relating to protecting the genetic privacy of newborn infants; defining terms; requiring consent of parent or guardian for genetic screening, retention of blood samples, and retention of test results; mandating the proposal of legislative rules to limit the amount of blood that may be sampled or taken from newborn infants; limiting the purposes for which blood samples and test results may be used; and declaring that the requirement for informe.
From the introduced text, March 17, 2025:
A BILL to amend the Code of West Virginia, 1931, as amended, by adding thereto a new article, designated §16-4G-1, §16-4G-2, §16-4G-3, and §16-4G-4, all relating to protecting the genetic privacy of newborn infants; defining terms; requiring consent of parent or guardian for genetic screening, retention of blood samples, and retention of test results; mandating the proposal of legislative rules to limit the amount of blood that may be sampled or taken from newborn infants; limiting the purposes for which blood samples and test results may be used; and declaring that the requirement for informed, voluntary consent may not be abrogated. ARTICLE 4G. NEWBORN GENETIC PRIVACY. §16-4G-1. Definitions. As used in this article: "Newborn screening" or "newborn genetic screening" means a public health program of procedure for screening infants shortly after birth for conditions that are treatable, but not otherwise clinically evident in the newborn period. "Blood spots" mean samples of blood that is collected onto a special filter paper by a health care worker from a newborn child and submitted for newborn genetic screening. §16-4G-2. Parental consent required for newborn genetic screening. (a) Parental consent requirements. -- Parents are permitted to refuse newborn genetic screening or to choose private newborn genetic screening. Notwithstanding any other state or federal law or regulation, prior to conducting newborn genetic screening, a health …