A new bill introduced by Del. Laura Kimble (R-Harrison, 71), would require parents to give written permission before their newborns can undergo genetic screening in West Virginia.
House Bill 3437 focuses on protecting the privacy of newborns and their families. The proposal would prevent hospitals and healthcare providers from conducting genetic tests on newborns without the separate, written, and informed consent of a parent or legal guardian. A general consent form signed at birth or hospital admission would not be enough.
Newborn genetic screening is a routine process used to detect rare but treatable conditions shortly after birth. It usually involves collecting a few drops of blood from the baby’s heel onto a special paper, often called a “blood spot.”
Under the bill, parents would also have to give separate written consent for any extra blood to be collected beyond what is needed for the initial test. The bill directs the state Department of Health to limit the amount of blood taken to what is necessary for the screening only.
In addition, the bill would require that both the blood samples and the test results be destroyed within three weeks unless the parent or guardian consents to their storage. Without consent, hospitals and state agencies would not be allowed to keep, share, or use the samples or results for research, public health, or any other purpose — including law enforcement.
If a parent agrees to keep the samples or results, they could still not be used for any purpose beyond the original screening without another round of written, voluntary consent.
The goal of the bill is to ensure that families are fully informed and have control over how their child’s genetic information is used and stored.
