Big Brother's Watching Your Children

iVillage Member
Registered: 01-22-2010
Big Brother's Watching Your Children
23
Thu, 02-04-2010 - 4:17pm

OK, this is a bit unnerving. When did the government begin keeping DNA samples? Recently? 5 years ago? And who else are they sampling besides children?  When you have a physical and pee in a cup is the physician required to send a sample to a government lab for storage and identification?


This goes one step beyond medical insurance companies knowing all about your medical history. NO ONE should have any thing to do with your your medical and physical history except you and your doctor. Unfortunately, more and more our bodies are being ruled by corporations and the government.


You think there won't come a time when you, your son or daughter, your husband, your siblings will be denied a job for medical reasons. It's coming faster than you think and monitoring of DNA is just one way that will begin.


 


The government has your baby's DNA

By Elizabeth Cohen, CNN Senior Medical Correspondent




February 4, 2010 9:11 a.m. EST

CNN)
-- 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.


"We were appalled when we found out," says Brown, who's a registered nurse. "Why do they need to store my baby's DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance."


According to the state of Minnesota's Web site, samples are kept so that tests can be repeated, if necessary, and in case the DNA is ever need to help parents identify a missing or deceased child. The samples are also used for medical research.


Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don't first ask permission to screen babies for genetic diseases. "It's paternalistic, but the state has an overriding interest in protecting these babies," he says.


However, he added that storage of DNA for long periods of time is a different matter.


"I don't see any reason to do that kind of storage," Caplan says. "If it's anonymous, then I don't care. I don't have an issue with that. But if you keep names attached to those samples, that makes me nervous."


DNA given to outside researchers


Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe problems, such as mental retardation. Since then, the screening has helped save countless newborns.


Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in state labs for anywhere from three months to indefinitely, depending on the state.


Brad Therrell, who runs the federally funded genetic resource consortium, says parents don't need to worry about the privacy of their babies' DNA.


"The states have in place very rigid controls on those specimens," Therrell says. "If my children's DNA were in one of these state labs, I wouldn't be worried a bit."


The specimens don't always stay in the state labs. They're often given to outside researchers -- sometimes with the baby's name attached.


According to a study done by the state of Minnesota, more than 20 scientific papers have been published in the United States since 2000 using newborn blood samples.


The researchers do not have to have parental consent to obtain samples as long as the baby's name is not attached, according to Amy Gaviglio, one of the authors of the Minnesota report. However, she says it's her understanding that if a researcher wants a sample with a baby's name attached, consent first must be obtained from the parents.


More Empowered Patient news and advice


Scientists have heralded this enormous collection of DNA samples as a "gold mine" for doing research, according to Gaviglio.


"This sample population would be virtually impossible to get otherwise," says Gaviglio, a genetic counselor for the Minnesota Department of Health. "Researchers go through a very stringent process to obtain the samples. States certainly don't provide samples to just anyone."


Brown says that even with these assurances, she still worries whether someone could gain access to her baby's DNA sample with Isabel's name attached.


"I know the government says my baby's data will be kept private, but I'm not so sure. I feel like my trust has been taken," she says.


Parents don't give consent to screening


Brown says she first lost trust when she learned that Isabel had received genetic testing in the first place without consent from her or her husband.


"I don't have a problem with the testing, but I wish they'd asked us first," she says.


Since health insurance paid for Isabel's genetic screening, her positive test for a cystic fibrosis gene is now on the record with her insurance company, and the Browns are concerned this could hurt her in the future.


"It's really a black mark against her, and there's nothing we can do to get it off there," Brown says. "And let's say in the future they can test for a gene for schizophrenia or manic-depression and your baby tests positive -- that would be on there, too."


Brown says if the hospital had first asked her permission to test Isabel, now 10 months old, she might have chosen to pay for it out of pocket so the results wouldn't be known to the insurance company.


Caplan says taking DNA samples without asking permission and then storing them "veers from the norm."


"In the military, for instance, they take and store DNA samples, but they tell you they're doing it, and you can choose not to join if you don't like it," he says.


What can parents do


In some states, including Minnesota and Texas, the states are required to destroy a baby's DNA sample if a parent requests it. Parents who want their baby's DNA destroyed are asked to fill out this form in Minnesota and this form in Texas.


Parents in other states have less recourse, says Therrell, who runs the genetic testing group. "You'd probably have to write a letter to the state saying, 'Please destroy my sample,'" he says.


He adds, however, that it's not clear whether a state would necessarily obey your wishes. "I suspect it would be very difficult to get those states to destroy your baby's sample," he says.

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iVillage Member
Registered: 10-28-2009
Thu, 02-04-2010 - 4:41pm
I've known about this for quite some time, but that's because my little ones are only 5 and 2 so it hasn't been that long since they had those tests. I personally don't have a problem with it, and here's my reasoning - if they are testing ALL kids for certain genetic disorders, they can't possibly then turn around and use that later to discriminate against such a large group of people. The American people wouldn't stand for it and laws would be put into place right quick. Another thing...it takes weeks and months to do DNA testing for crimes. I'm not really concerned that all these samples sitting around are going to all of a sudden get worked on to discover everything about everyone. There just isn't enough time or money to do it.


Edited 2/4/2010 4:44 pm ET by shannon.fannon
iVillage Member
Registered: 08-30-2002
Thu, 02-04-2010 - 4:43pm
In California they do all babies at birth. My dd was a homebirth. We didn't get her birth certificate until she was about a month old. A few months later I get a call from the state telling me I was in violation of the law for not having her genetically tested. I told them I had moral and ethical objections to having her tested. They HOUNDED me. I recieved probably 5 calls a day, from 5 different workers "explaining" to me I was in violation of state law. I then recieved a call from CPS. They were concerned that my child was "at risk," not just because I had not had her genetically tested, but because I had a home birth (which is NOT against the law), and "may have had inadequate pre-natal care." I faxed them my schedule of pre-natal appointments, with an OB/Gyn, and asked who my attorney should contact for violating my religious freedom, and they finally stopped calling, and sent me the form to sign so I could opt out. They claimed that these tests were for my childs protection. To test for PKU, etc. The thing is, by the time they started harassing me about it, my dd would have already had the symptoms/damage of the disease. This test should be done between 12 hours and 6 days of being born, and my dd was about 5 months old already.


iVillage Member
Registered: 10-28-2009
Thu, 02-04-2010 - 4:46pm

<>

Now that's just plain dumb to harass people for something that is way past the point of being helpful.

iVillage Member
Registered: 01-22-2010
Fri, 02-05-2010 - 8:08am

The more I hear about government the more amazed I become.


I laugh when I hear the conservative fringe groups talk about wanting less government.

iVillage Member
Registered: 03-18-2000
Fri, 02-05-2010 - 10:44am
If it's anonymous & used solely for research I don't have a problem with genetic testing.

 


Photobucket&nbs

iVillage Member
Registered: 01-22-2010
Fri, 02-05-2010 - 11:25am
I agree. I don't have a problem with genetic testing for the purposes of medical research. But when the government gets involved I begin having bad feelings about it.
iVillage Member
Registered: 03-26-2003
Fri, 02-05-2010 - 11:54am
I would like to see all newborn babies have their umbilical cord blood frozen. There are two little boys on our prayer list who have neuroblastoma and they have had several stem cell transplants from their own blood. Think what lives could be saved if all children had their own blood, stored in a central location that could someday be used to collect stem cells for their benefit. DNA tests are good when they are used to identify problems....our granddaughter was found to have no thyroid function at birth and has been on meds for that since then. She is now six and growing at a normal rate.
 
iVillage Member
Registered: 03-18-2000
Fri, 02-05-2010 - 12:29pm

"when the government gets involved I begin having bad feelings about it."


I agree. What next implanting micro-chips? The technology is there.


A few years ago I was disturbed that car rental companies could track one's whereabouts, speed & such. Nowadays with GPS

 


Photobucket&nbs

iVillage Member
Registered: 03-18-2000
Fri, 02-05-2010 - 12:36pm

Like most technologies it can be used for good or have a darker use.


Do you

 


Photobucket&nbs

iVillage Member
Registered: 08-30-2002
Fri, 02-05-2010 - 4:38pm
Cord blood banking is an option open to most parents, at their expense. Usually their insurance won't pay for it and not all hospitals do it.


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