Monday, May 12, 2008

The Newborn Screening Saves Lives Act of 2007

On Thursday, April 24, 2008, the President signed into law S. 1858, the "Newborn Screening Saves Lives Act of 2007," which authorizes through fiscal year 2012 new and existing programs at the Department of Health and Human Services concerning newborn screening. A detailed analysis of the implications for genetic privacy and consent rights shows how the government plans to treat the DNA of every newborn:
  • 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.
Soon, under this bill, the DNA of all citizens will be housed in government genomic biobanks and considered governmental property for government research. The DNA taken at birth from every citizen is essentially owned by the government, and every citizen becomes a potential subject of government-sponsored genetic research.

S. 1858 imposes a federal agenda of genetic data warehousing and population-wide genetic research. It does not require consent and there are no requirements to fully inform parents about the warehousing of their child's DNA for the purpose of genetic research.