The Government Is Storing Your Child's DNA!
pO157.
Posted to Legal on Mon Feb 08, 2010 at 10:13:02 AM EST (promoted by port1080). RSS.
It sounds like something out of a crazy "tin foil hat" conspiracy theory. But it's true: under the guise of health testing for genetic birth defects the vast majority of babies born in this country now have their DNA stored in government banks for years, decades, or indefinitely, often without recourse.
In one case, the Brown family was called into their pediatrician's office. The doctor calmly explained that while their child was well now she could could come down with Cystic-Fibrosis.The parents were glad to be told, but completely shocked that the doctor could know this without asking them for permission to run diagnostic tests. They later found out their baby did not have CF, and that the doctor found out this information through a mandatory genetic screening program. Since the government mandates that babies be tested, parents often do not know, nor are they usually asked for consent.
Soon after birth a heel prick test occurs where blood is taken from a babies' foot and soaked onto a 'Guthrie card.' The dried blood on these cards is then used for genetic testing against a whole panel of diseases, and then stored indefinitely. In many states these blood samples are kept for a significant amount of time after testing in various facilities. For example, New York state mandates keeping this on file for 27 years. Other states keep the blood on hand indefinitely. While two states (Texas and Minnesota) allow parents to submit forms to the bureaucracy to get their child's samples out of the databank, there is little to no recourse for parents in other states to prevent the government from holding on to their kids' genetic code forever.
As you can expect some parents were outraged. Lawsuits against the program arose in Minnesota and Texas, and parents wondered if it was appropriate for the government to keep their child's genetic blueprint on file. This information is then used for nebulous purposes, including medical and genetic research. A study by Minnesota says its databanks have been used in 20 scientific publications since 2000, and says that parents need not worry, because their child's name is not attached to genetic samples given to researchers.
Besides the obvious privacy concerns, families like the Browns worry about long term problems for their daughter. Due to the testing done without their consent the family insurance carrier now knows that their daughter initially tested positive for Cystic Fibrosis. They believe this will hamper the ability of their daughter to get coverage later. Others worry about other uses by the state for the DNA, including comparisons of this information with genetic information left at crime scenes --- a problem which has lead to the imprisonment of many innocent people.
Proponents of mandatory genetic testing of newborns generally include foundations whose emotionally charged advertisements fill the airwaves. States such as Minnesota defend their indefinite storage of DNA by saying that they might want to repeat genetic testing someday, or to help identify a dead body, or for medical research. Others, like Bioethicist Art Caplan, say he can understand why the state does this. "It's paternalistic, but the state has an overriding interest in protecting these babies." he says.
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