The bill states that the federal government should "continue to carry out, coordinate, and expand research in newborn screening" and "maintain a central clearinghouse of current information on newborn screening... ensuring that the clearinghouse is available on the Internet and is updated at least quarterly".
- Brase states that S.1858 and H.R. 3825, the House version of the bill, will:
- Establish a national list of genetic conditions for which newborns and children are to be tested. Establish protocols for the linking and sharing of genetic test results nationwide.
- Build surveillance systems for tracking the health status and health outcomes of individuals diagnosed at birth with a genetic defect or trait.
- Use the newborn screening program as an opportunity for government agencies to identify, list, and study "secondary conditions" of individuals and their families.
- Subject citizens to genetic research without their knowledge or consent.
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