HB 3437
To Protect Newborn Genetic Privacy Rights
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- Passed House of Delegates
- Passed Senate
- To Governor
- Became Law
Bill overview
This bill, HB 3437, aims to protect the genetic privacy rights of newborn infants in West Virginia. It requires explicit, written consent from parents or guardians before genetic screening is conducted, blood samples are taken, or test results are retained. The bill also mandates that blood samples be limited to the amount needed for screening and restricts the purposes for which these samples and results can be used. Finally, it sets a three-week limit on the retention of both blood spots and test results.
Key provisions
- Requires express, written consent from parents or guardians for newborn genetic screening.
- Limits the amount of blood drawn from newborns for screening.
- Establishes a three-week retention limit for blood spots and test results.
- Prohibits the use of blood spots and test results for research or law enforcement purposes without further consent.
- Defines key terms such as ‘newborn screening’ and ‘blood spots’.
- Mandates the creation of legislative rules to limit blood sample collection.
- Requires consent forms to use easily understandable language.
- Prohibits waiving the consent requirement.
Who is affected
- Newborn infants and their parents/guardians
- Healthcare facilities and providers
- State and county health agencies
- Researchers and medical professionals
- Law enforcement agencies
Notable changes
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