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article imageBill to ban unauthorized use of infant DNA Clears Senate Committee

By KJ Mullins     Feb 11, 2010 in Politics
The Senate Judiciary Committee has approved a bill that would ban medical facilities from storing infant DNA without parental consent on Tuesday.
The DNA of your children is in the government's hands if you live in the United States. All 50 states require hospitals to collect a sample of every newborn's blood.
That sample is used to test for PKU, a disease that can cause brain and nerve damage, and a number of other diseases. In California newborn blood is tested for 76 different medical conditions.
Some are asking what happens to that blood sample when the primary use has been fulfilled. The answers aren't on the government pamphlet given to parents put out by the American Academy of Pediatrics. The pamphlet only talks about tests that can save your child's life.
As of February 10, 2010 parents will have to give consent to allow the government to store their infant's blood spot.
GTR Newspapers quotes the author of Senate Bill 1250, Sen. Jonathan Nichols :
“When a child is born, the hospital takes a small blood sample to screen for certain diseases, and that’s a practice that is obviously beneficial to the infant. The problem we’ve seen in other states is that some medical facilities have been keeping those samples and using them for unauthorized research,” explained Nichols, R-Norman. “We don’t want that to happen in Oklahoma. There are serious privacy and ethics concerns that have been breached around the country with the unauthorized databasing of infant DNA. My initial inquiries indicate this has not occurred in Oklahoma, but requiring consent by law will help ensure that it never does.”
Most of the stored samples are used for medical research. That research is conducted without the parents knowledge in most cases.
Some states store that sample for up to 23 years. While parents in many states at this time can opt out of having their children's blood stored it is rarely mentioned.
The Centers for Disease Control and Prevention has been calling for a national databanks of the samples since 2002. The National Institutes of Health is creating a national blood sample repository using $13.5 million, money that comes from tax payers.
In 2008 then President George Bush signed into law the Newborn Screening Saves Lives Act of 2007 and the Genetic Information Nondiscrimination Act (GINA) of 2008, allowing for the federal government to screen all infants born in the US. The justification reports The Atlanta Journal was to have a “national contingency plan” to meet “public health emergencies.”
Opponents of DNA storage want to see biobanks destroyed. Twila Brase, part of Citizen's Council on Health Care, was quoted in 2008 by Wired:
"You're building an entire DNA warehouse for the public without the public's consent," Brase said. "Who will own the DNA of the citizens and what is that going to mean? And what we're doing is pushing an entire genetic research program on the population without the consent of the population."
At this time there are Baby DNA Lawsuits taking place in Minnesota and Texas.
The case in Minnesota was filed by 9 families. On November 24, 2009 the case was dismissed. An appeal was filed by the attorney of January 13, 2010.
The Texas case was filed by five parents in March of 2009. The lawsuit was settled when it was agreed that all blood spots collected without parental permission since 2002 would be destroyed. Parents of newborns in Texas have to now sign a form on the day of the screening or their child's blood spot will be retained.
SB 1250 now moves to the full Senate for consideration.
More about Infant dna, Dna storage, Blood spots
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