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sharingwisdom
02-15-2010, 05:09 PM
The government has your baby's DNA
February 4, 2010, CNN
https://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html (https://www.cnn.com/2010/HEALTH/02/04/baby.dna.government/index.html)
When Annie Brown's daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis. While grateful to have the information -- Isabel received further testing and she doesn't have the disease -- the Mankato, Minnesota, couple wondered how the doctor knew about Isabel's genes in the first place. After all, they'd never consented to genetic testing. It's simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it's often done without the parents' consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.

In many states, such as Florida, where Isabel was born, babies' DNA is stored indefinitely, according to the resource center. Many parents don't realize their baby's DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents' concerns are sparking a new debate about whether it's appropriate for a baby's genetic blueprint to be in the government's possession.

LenInSebastopol
02-15-2010, 06:53 PM
This is something that is REALLY scary.

Most Americans are beyond race, actually, in spite of the drum some folks keep banging, but this stuff IS the new "racism" and needs to be checked at every single point.
On the face of it, "So what" may loom large, but such information is probably the most powerful element of the coming century.
Be afraid, be ready to put it down and in check at every single instance.

Sylph
02-15-2010, 08:28 PM
Len, where did race come into it? I must have missed something. Race can't be determined by DNA, only specific traits.
This is a very intriguing question. Our information, DNA and otherwise, is more and more available on some database "out there" and we have to take it on faith that our health professionals or someone else with access will not break that trust. As a health professional, I am aware that the penalty for violating that trust is severe.
About 5,000 babies with genetic problems are identified every year with this testing, saving many from permanent brain damage or other disasterous outcomes. I wonder why not have a consent form for the parents explaining the testing and the storage? That there was no consent is the basis for the Texas lawsuit. As a result, millions of blood samples will be destroyed.
Who knows what could be learned if qualified scientists had access to them, under proper protocols of course. "Scientist consider them a treasure":
The list of genetic diseases:
https://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersDetectable121509.pdf (https://www.cdph.ca.gov/programs/nbs/Documents/NBS-DisordersDetectable121509.pdf)
The procedure:
https://www.cdph.ca.gov/programs/nbs/Pages/NBSEnsuringTestingInfants.aspx (https://www.cdph.ca.gov/programs/nbs/Pages/NBSEnsuringTestingInfants.aspx)
https://www.nydailynews.com/lifestyle/health/2010/02/09/2010-02-09_screening_blood_from_newborn_babies_used_in_research_angers_parents.html?page (https://www.nydailynews.com/lifestyle/health/2010/02/09/2010-02-09_screening_blood_from_newborn_babies_used_in_research_angers_parents.html?page)
A critical safety net for babies — that heelprick of blood taken from every newborn in the U.S. (https://www.nydailynews.com/topics/United+States) — is facing an ethics attack.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
After those tiny blood spots are tested for a list of devastating diseases, some states are storing them for years. Scientists consider the leftover samples a treasure, both to improve newborn screening and to study bigger questions, like which environmental toxins can harm a fetus' developing heart or which genes trigger childhood cancers.<o:p></o:p>
But seldom are parents asked to consent to such research — most probably do not know it occurs — raising privacy concerns that are shaking up one of public health's most successful programs. Texas (https://www.nydailynews.com/topics/Texas) is poised to throw away blood samples from more than 5 million babies to settle a lawsuit from parents angry at what they call secret DNA warehousing. A judge recently dismissed a similar lawsuit in Minnesota (https://www.nydailynews.com/topics/Minnesota).<o:p></o:p>
Michigan (https://www.nydailynews.com/topics/Michigan) just moved 4 million leftover blood spots into a new "BioTrust for Health," planning a public education campaign about the research potential and how families can opt out.<o:p></o:p>
Advisers to the <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" /><st1:country-region w:st="on"><st1:place w:st="on">U.S.</st1:place></st1:country-region> government hope to have national recommendations by in two months on how to assure all babies still get their newborn tests while allowing parents more say in what happens next.

Read more: https://www.nydailynews.com/lifestyle/health/2010/02/09/2010-02-09_screening_blood_from_newborn_babies_used_in_research_angers_parents.html#ixzz0ffWSWVhC (https://www.nydailynews.com/lifestyle/health/2010/02/09/2010-02-09_screening_blood_from_newborn_babies_used_in_research_angers_parents.html#ixzz0ffWSWVhC)