Sadly, on June 24th, the US House passed HR 1281, a bill that nationalizes newborn genetic screening without consent on a voice vote without a roll call or amendments. There are many problems with the bill from a health care freedom and privacy standpoint that include as described by great expert on and champion of medical freedom and privacy, Twila Brase of Citizens Council for Health Freedom in her alert:
2) Long-Term Surveillance.
3) Nationalized Newborn Screening.
4) Intrusive Labeling, Profiling and Sharing.
5) Genetic Research on Newborns.
6) Genetic Testing of Newborns for Conditions Not Yet Determined Appropriate for Newborn Screening.
7) $99.5 Million Price Tag.
The reason that Education Liberty Watch and our project organization, The Florida Stop Common Core Coalition are so concerned is because there is already at least one state program in place that is linking this newborn genetic data to early childhood and K-12 databases being implemented through the Race to the Top and Race to the Top Early Learning Challenge and linked to the Common Core standards and related tests. Rhode Island said the following in their Early Learning Challenge grant application:
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