Nov 132015
 November 13, 2015  Healthcare, Surveillance

Julie Watts reports:

This might come as a surprise to California natives in their 20s and early 30s: The state owns your DNA.

Every year about four million newborns in the U.S. get a heel prick at birth, to screen for congenital disorders, that if found early enough, can save their life.

Danielle Gatto barely remembers the nurse even mentioning test performed on her two daughters. “I don’t think that any woman is in a state of mind to sit down and start studying up on the literature they send you home with,” she said.

But later she was shocked to find, her daughters’ leftover blood was not thrown away. “The state collects the cards and then uses them in a database,” she said. The information is buried on page 12 of the brochure about the Newborn Screening Program that hospitals give parents of newborns before they go home.

Read more on CBS.

The issue of state collection of newborns’ DNA is not a new one. Back in March, 2008, Marti Oakley wrote:

Unknown to most new parents, or those who became parents in the last ten or so years, DNA of newborns has been harvested, tested, stored and experimented with by all 50 states.  And all 50 states are now routinely providing these results to the Homeland Security Department.

And for years, some parents in Minnesota fought the state’s claim that the state owned the DNA and could do what it wanted with it without informed consent (cf, this report). And it was only last year that alarm bells started sounding in Indiana.

In other words, this is definitely not a new problem but parents continue to remain in the dark and states continue to do what they want to with the DNA samples.

And while genetic research is vitally important, the risks of identification and the risks of government trying to use DNA samples for purposes other than their original use remain serious concerns that have yet to be adequately addressed.

In the meantime, you should consult your state’s laws to determine if you can demand removal/destruction of your children’s samples. That won’t result in a recall of samples sent elsewhere already, but it might prevent future use/dissemination should you want to block it.

Thanks to Joe Cadillic for the CBS link.

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