HB 5547
To Protect Newborn Genetic Privacy Rights
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- Passed House of Delegates
- Passed Senate
- To Governor
- Became Law
Bill overview
This bill, House Bill 5547, 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 performed, blood samples are retained, or test results are used for any purpose. The bill also mandates that health care facilities propose rules to limit the amount of blood collected and restricts the uses of blood samples and test results to only those with further consent. Finally, it establishes a process for revoking consent.
Key provisions
- Requires express, written consent from parents or guardians for newborn genetic screening.
- Limits the amount of blood that can be collected from newborn infants.
- Prohibits the retention of blood samples and test results longer than three weeks without consent.
- Restricts the uses of blood samples and test results to specified purposes, requiring additional consent for research or other uses.
- Mandates the creation of a public form for revoking consent for storage, sharing, and use of samples.
- Requires health care facilities to provide information about the newborn screening program to parents during pregnancy.
- Defines key terms related to newborn genetic screening, such as ‘newborn screening’ and ‘blood spots.’
- Establishes a timeframe for the Bureau for Public Health to propose additional diseases for screening.
Who is affected
- Newborn infants and their parents or guardians
- Healthcare facilities and providers
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