While there is little disagreement over the value of newborn screening, what happens after the screening is causing a contentious debate nationwide. At issue is whether state government officials are permitted to automatically keep the DNA and genetic test results of every newborn or whether parents must be asked before the child's genetic information is stored, used, and shared for analysis, research and other state government purposes. Most parents do not know that newborn screening is genetic testing. But as Dr. Jeffrey Botkin at the University of Utah's Department of Pediatrics and Medical Ethics has said, newborn screening is the "largest single application of genetic testing in medicine." In the past, newborn blood and test results were destroyed after the testing was done and the results were reported. But increasingly, state health departments have started storing, using and sharing the child's genetic information for research and analysis - without parental consent. Therein lies the rub.
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