The government is collecting DNA - Tilted Forum Project Discussion Community

Cynthetiq · 02-04-2010, 06:49 PM

Quote:

View: The government has your baby's DNA
Source: CNN
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The government has your baby's DNA

By Elizabeth Cohen, CNN Senior Medical Correspondent
February 4, 2010 9:11 a.m. EST

Anne Brown worries that someone could gain access to the DNA sample from her daughter Isabel with Isabel's name attached.

STORY HIGHLIGHTS

Genetic testing for newborns started in the 1960s
Specimens are often given to outside researchers
Scientists have said the collection of DNA samples is a "gold mine" for doing research

(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. (To find out how long your baby's DNA is stored, see this state-by-state list.)
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.

Should the government have access to your DNA? Should they be collecting even anonymous DNA samples?

I don't think that DNA should be collected by the government but like all things for privacy, private companies do more with data than the government does. With private companies though you at least have some respite knowing that it's just that organization.

I'm definitely against the government doing such a thing especially when they didn't notify the parents beforehand.

Willravel · 02-04-2010, 07:07 PM

An invasion of privacy is wrong because it assumes mistrust. I've not done anything to lose the trust of the government, therefore I expect to be treated as trustworthy. An infant obviously has done nothing to lose the trust of the government, therefore I cannot see any justification for this treatment.

It's still legal in the US to have a baby outside of the hospital system. Midwives and the like probably aren't as common as they once were, but there are certainly some. IIRC, other than getting a host of immunization shots, the medical system does not need access to a baby's cardiovascular system. It's disgusting this kind of thinking is necessary, though.

SSJTWIZTA · 02-04-2010, 10:40 PM

they already collect our pee, so, whatever.

Vigilante · 02-05-2010, 01:28 AM

The vast majority of Americans could not describe to you the physical structure of DNA to begin with, so it doesn't surprise me that the public has not shit their pants just yet. Out of sight, out of mind.

Xerxys · 02-05-2010, 05:37 AM

Quote:

Originally Posted by Willravel

An invasion of privacy is wrong because it assumes mistrust. I've not done anything to lose the trust of the government, therefore I expect to be treated as trustworthy. An infant obviously has done nothing to lose the trust of the government, therefore I cannot see any justification for this treatment. ...

... just sayin ...

Ourcrazymodern? · 02-05-2010, 11:51 AM

How does knowing what you are equate with knowing what you do? DNA is used like a dirty word, here. $$$$$$$$!

uncle phil · 02-05-2010, 01:10 PM

they've had my fingerprints forever...

i have no problem with submitting a sample of my dna to the appropriate agency or department...

rahl · 02-05-2010, 01:18 PM

I don't really see the big deal here. The govn't can't use it in say a criminal investigation without obtaining a warrant. If they obtain a warrant you would be forced to submit a sample anyway, this way it's already on file. So once a warrant is obtained it will already be in the database.

Shell · 02-05-2010, 01:21 PM

Quote:

...samples are kept...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.

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.

I see more benefits than problems after reading this article. Storing a child's DNA helps identify missing or deceased children for one. Also, it was found that the child above was at risk for cystic fibrosis...that information could be helpful for early detection and treatment.

Only some selected research companies receive the DNA and genetic testing results, and those results are only released without the child's name attached. Medical research is a good thing.

Cynthetiq · 02-05-2010, 01:46 PM

Quote:

Originally Posted by Shell

I see more benefits than problems after reading this article. Storing a child's DNA helps identify missing or deceased children for one. Also, it was found that the child above was at risk for cystic fibrosis...that information could be helpful for early detection and treatment.

Only some selected research companies receive the DNA and genetic testing results, and those results are only released without the child's name attached. Medical research is a good thing.

The same data could also be the basis for increased health insurance costs in the future. Genetic discrimination is a bad thing.

Pearl Trade · 02-05-2010, 01:57 PM

Quote:

Originally Posted by rahl

I don't really see the big deal here. The govn't can't use it in say a criminal investigation without obtaining a warrant. If they obtain a warrant you would be forced to submit a sample anyway, this way it's already on file. So once a warrant is obtained it will already be in the database.

This. If you don't want to be in trouble, don't fuck up. Simple enough.

What's the big deal about DNA? Oh no, they know what I consist of! Big deal. I'll give them whatever they want. (To an extent

)

Martian · 02-05-2010, 02:52 PM

Quote:

Originally Posted by rahl

I don't really see the big deal here. The govn't can't use it in say a criminal investigation without obtaining a warrant. If they obtain a warrant you would be forced to submit a sample anyway, this way it's already on file. So once a warrant is obtained it will already be in the database.

I seem to recall that not too long ago the US government also couldn't perform wiretaps without a warrant.

Giant Hamburger · 02-05-2010, 03:17 PM

My only hope is that the government is growing an enormous polycephalic baby deep beneath the earth.

I have no other hopes besides that one.

rahl · 02-05-2010, 04:05 PM

Quote:

Originally Posted by Martian

I seem to recall that not too long ago the US government also couldn't perform wiretaps without a warrant.

They still can't. The patriot act allowed for a "secret" court...FISA. It still requires a warrant

girldetective · 02-05-2010, 05:59 PM

I believe in Science.
That should say it all.
Remember the Genome project?!
How exciting it was and still is?!

Although this article intimates there may be a future threat with DNA being stored,
and I understand re health ins and so on, the reality is that you are shedding junk
all the time that anyone could pick up and store.

If the DNA is pure and can be used blindly in research to learn more about ourselves, cool.
There are more important things to worry about right now.

Besides, one day when we are able to get our own DNA readouts
I imagine
they will be posted on Craigslist within minutes.

The_Dunedan · 02-07-2010, 09:30 AM

One more reason my wife/partner, should I ever one and should she ever get pregnant, will hopefully give birth at home. It is no business of Government, an institution characterised most properly the fact that the only things it does properly are rob people and kill people, to be collecting the DNA of myself, my hypothetical future children, or any member of my family. The invasion of privacy here is disgusting.

Quote:

Quote:
Originally Posted by Martian View Post
I seem to recall that not too long ago the US government also couldn't perform wiretaps without a warrant.
They still can't. The patriot act allowed for a "secret" court...FISA. It still requires a warrant

Actually no. FISA was set up during the Carter Regime. USA PATRIOT and it's excrementitious follow-ons radically expanded the scope of FISA, while equally radically degrading the protections contained therein. Hence "warrantless wiretaps" and all that. It's worth noting that much of this simply codified expansions which had taken place "under the table" during the Clinton Regime. It's also worth noting that the FISA "courts" meet in secret, have no adversarial process, have no appeals process, does not hear evidence other than that presented by the DoJ, and out of thousands of applications for warrants have only ever refused -two-. FISA "courts" exist to rubber-stamp the plainly unconstitutional demands of various FedGov "law enforcement" agencies.

Canine · 02-10-2010, 11:25 AM

I don't see what the problem is. Why do you care if your DNA profile is sitting on a computer somewhere along with 300 million others?
If your DNA is never needed for anything, chances are no one will ever even look at it. And when some woman gets raped or a murderer's spit is found, all they would have to do is scan a genetic database to find the offender.

The only people who really have anything to lose from that would be those who would commit a crime and be identified through DNA.

So, keeping DNA alone has no real drawbacks. In the future new technologies that actually have some tangible effect on us might cause problems, but for now, nothing.
Maybe we'll have genetic drivers licenses someday?

Hanabal · 02-10-2010, 12:21 PM

One issue is that DNA is far from the 1 in 55 billion thing that they say on TV. There have already been cases of DNA collisions (multiple people from different backgrounds having the exact same DNA markers) and if the database gets everyone's DNA it will just get worse.

My big gripe is the future. We don't know what people will do with the info in the future. At the moment it might only be for good, but history has shown us that there is a good chance that eventually this info could be used against us. If the use is good for me, let me choose if I want it.

Canine · 02-10-2010, 12:28 PM

Quote:

Originally Posted by Hanabal

One issue is that DNA is far from the 1 in 55 billion thing that they say on TV. There have already been cases of DNA collisions (multiple people from different backgrounds having the exact same DNA markers) and if the database gets everyone's DNA it will just get worse.

it would be as simple as checking the DNA upon entry into the system. "Oh, these two guys have similar markers. Noted, moving on..."

powerclown · 02-10-2010, 06:48 PM

Pretty soon babies will have intercranial microchips implanted at birth and humans will be like cars equipped with OnStar....that is, remotely controlled and monitored. They will be able to adjust you on the fly in realtime. For example, if they don't like you they'll just "cut the ignition". I think they may be doing this already in China.

MSD · 02-11-2010, 04:45 PM

If nothing else, this inspires distrust in science and modern medicine among the general public and is therefore a bad thing.

Quote:

Originally Posted by Canine

The only people who really have anything to lose from that would be those who would commit a crime and be identified through DNA.

I would not trust a government that would quietly collect DNA samples of every citizen under the presumption that they may be guilty of something in the future to restrain itself from passing unjust laws under which such a database could be used. This comes down to informed consent, and we apparently have not been allowed to exercise that right for ourselves or make the choice for our children. This may be benign now, but it could easily escalate into a more actively harmful violation of human rights on a massive scale.

Canine · 02-11-2010, 06:08 PM

I can't really imagine any human rights that could be potentially violated through DNA collection. Maybe as a basis for a eugenics program but that sort of thing being made into law in the civilized world is remote to say the least.

MSD · 02-12-2010, 10:03 AM

Quote:

Originally Posted by Canine

I can't really imagine any human rights that could be potentially violated through DNA collection. Maybe as a basis for a eugenics program but that sort of thing being made into law in the civilized world is remote to say the least.

A non-consensually compiled database can be used to aid in the enforcement of hypothetical future unjust laws without affording individuals their due process rights.

Canine · 02-12-2010, 12:47 PM

Quote:

Originally Posted by MSD

A non-consensually compiled database can be used to aid in the enforcement of hypothetical future unjust laws without affording individuals their due process rights.

The only thing that would accomplish is getting the guilty in prison quicker and the innocent out of prison quicker.

The_Dunedan · 02-12-2010, 05:27 PM

Quote:

The only thing that would accomplish is getting the guilty in prison quicker and the innocent out of prison quicker.

Until and unless an unscrupulous Cop, DA, etc. decides to "make the case fit" on someone they "just KNOW" is guilty. Until and unless, someone with access (which mostly comes down to a fat wallet in the pocket and a few short-n-curlies in the hand) decides to use it for blackmail or extortion. Until and unless a government is elected which sees no difficulty in "profiling" people based upon their genetic profiles.

And of course, the bottom line is that my DNA, like that of hypothetical wife and children, plus all of -you-, is NOT THE FEDGOV'S BUSINESS. Period. THE END.

Canine · 02-12-2010, 05:35 PM

what about things like your social security number, date of birth, mothers maiden name? Things like that are all in the federal government's possession, and with the right documents you could completely and thoroughly destroy a person's life. Genetic blackmail in the future would be nothing compared to what a person with the right paperwork today could do.

Xerxys · 02-12-2010, 07:30 PM

Quote:

Originally Posted by Canine

what about things like your social security number, date of birth, mothers maiden name? Things like that are all in the federal government's possession, and with the right documents you could completely and thoroughly destroy a person's life. Genetic blackmail in the future would be nothing compared to what a person with the right paperwork today could do.

It would be just another yet different way of inconveniencing someone. I think if you had your genetic markers tied in with your ID stealing it would make someone in Nigeria have a hard time flying to UK and back on your fake credit card they ordered in the mail.

MSD · 02-14-2010, 08:08 AM

Quote:

Originally Posted by Canine

The only thing that would accomplish is getting the guilty in prison quicker and the innocent out of prison quicker.

If a law is unjust, finding someone guilty of violating that law is unjust.

Quote:

Originally Posted by Canine

what about things like your social security number, date of birth, mothers maiden name? Things like that are all in the federal government's possession, and with the right documents you could completely and thoroughly destroy a person's life. Genetic blackmail in the future would be nothing compared to what a person with the right paperwork today could do.

I don't leave traces of my social security number and mother's maiden name behind every time I lose a hair or bleed.

Canine · 02-14-2010, 10:00 AM

Quote:

Originally Posted by MSD

If a law is unjust, finding someone guilty of violating that law is unjust.

I don't leave traces of my social security number and mother's maiden name behind every time I lose a hair or bleed.

If its a law then its the job of the legal system to convict people who violate that law, whether that law is unjust or not. People will be convicted with or without DNA evidence. The DNA will just help to ensure that only the guilty are convicted.

The government wouldn't collect every lost hair or drop of blood, either. It would be an enormously pointless and expensive task for the government to go around collecting every bit of DNA that happens upon the ground or in the trash just to keep tabs on people.

02-04-2010, 10:40 PM	#3 (permalink)
SSJTWIZTA Master Thief. Master Criminal. Masturbator. Location: Windiwana	they already collect our pee, so, whatever. __________________ First they came for the Jews and I did not speak out because I was not a Jew. Then they came for the communists and I did not speak out because I was not a communist. Then they came for the trade unionists and I did not speak out because I was not a trade unionist Then they came for me And there was no one left to speak out for me. -Pastor Martin Niemoller

02-05-2010, 01:28 AM	#4 (permalink)
Vigilante Broken Arrow Location: US	The vast majority of Americans could not describe to you the physical structure of DNA to begin with, so it doesn't surprise me that the public has not shit their pants just yet. Out of sight, out of mind. __________________ We contend that for a nation to try to tax itself into prosperity is like a man standing in a bucket and trying to lift himself up by the handle. -Winston Churchill

02-05-2010, 11:51 AM	#6 (permalink)
Ourcrazymodern? still, wondering. Location: South Minneapolis, somewhere near the gorgeous gorge	How does knowing what you are equate with knowing what you do? DNA is used like a dirty word, here. $$$$$$$$! __________________ BE JUST AND FEAR NOT

02-05-2010, 01:10 PM	#7 (permalink)
uncle phil comfortably numb... Super Moderator Location: upstate	they've had my fingerprints forever... i have no problem with submitting a sample of my dna to the appropriate agency or department... __________________ "We were wrong, terribly wrong. (We) should not have tried to fight a guerrilla war with conventional military tactics against a foe willing to absorb enormous casualties...in a country lacking the fundamental political stability necessary to conduct effective military and pacification operations. It could not be done and it was not done." - Robert S. McNamara ----------------------------------------- "We will take our napalm and flame throwers out of the land that scarcely knows the use of matches... We will leave you your small joys and smaller troubles." - Eugene McCarthy in "Vietnam Message" ----------------------------------------- never wrestle with a pig. you both get dirty; the pig likes it.

02-05-2010, 01:18 PM	#8 (permalink)
rahl Junkie Location: Ohio	I don't really see the big deal here. The govn't can't use it in say a criminal investigation without obtaining a warrant. If they obtain a warrant you would be forced to submit a sample anyway, this way it's already on file. So once a warrant is obtained it will already be in the database. __________________ "Your life is Yours alone...Rise up and live it"

02-04-2010, 07:07 PM	#2 (permalink)
Willravel ... a sort of licensed troubleshooter.	An invasion of privacy is wrong because it assumes mistrust. I've not done anything to lose the trust of the government, therefore I expect to be treated as trustworthy. An infant obviously has done nothing to lose the trust of the government, therefore I cannot see any justification for this treatment. It's still legal in the US to have a baby outside of the hospital system. Midwives and the like probably aren't as common as they once were, but there are certainly some. IIRC, other than getting a host of immunization shots, the medical system does not need access to a baby's cardiovascular system. It's disgusting this kind of thinking is necessary, though.

02-05-2010, 03:17 PM	#13 (permalink)
Giant Hamburger Gastrolithuanian Location: low-velocity Earth orbit	My only hope is that the government is growing an enormous polycephalic baby deep beneath the earth. I have no other hopes besides that one.

02-05-2010, 05:59 PM	#15 (permalink)
girldetective sufferable	I believe in Science. That should say it all. Remember the Genome project?! How exciting it was and still is?! Although this article intimates there may be a future threat with DNA being stored, and I understand re health ins and so on, the reality is that you are shedding junk all the time that anyone could pick up and store. If the DNA is pure and can be used blindly in research to learn more about ourselves, cool. There are more important things to worry about right now. Besides, one day when we are able to get our own DNA readouts I imagine they will be posted on Craigslist within minutes. __________________ As far as possible, without surrender, be on good terms with all persons...be cheerful; strive for happiness - Desiderata

02-10-2010, 11:25 AM	#17 (permalink)
Canine Upright Location: Fort Bragg, NC / Kandahar Province, Afghanistan	I don't see what the problem is. Why do you care if your DNA profile is sitting on a computer somewhere along with 300 million others? If your DNA is never needed for anything, chances are no one will ever even look at it. And when some woman gets raped or a murderer's spit is found, all they would have to do is scan a genetic database to find the offender. The only people who really have anything to lose from that would be those who would commit a crime and be identified through DNA. So, keeping DNA alone has no real drawbacks. In the future new technologies that actually have some tangible effect on us might cause problems, but for now, nothing. Maybe we'll have genetic drivers licenses someday? __________________ Awesome sig coming to a post near you! If you say plz because its shorter than please, then I'll say no because its shorter than yes.

02-10-2010, 12:21 PM	#18 (permalink)
Hanabal Insane Location: Auckland	One issue is that DNA is far from the 1 in 55 billion thing that they say on TV. There have already been cases of DNA collisions (multiple people from different backgrounds having the exact same DNA markers) and if the database gets everyone's DNA it will just get worse. My big gripe is the future. We don't know what people will do with the info in the future. At the moment it might only be for good, but history has shown us that there is a good chance that eventually this info could be used against us. If the use is good for me, let me choose if I want it. __________________ I am Hanabal, Phear my elephants

02-10-2010, 06:48 PM	#20 (permalink)
powerclown Junkie Location: Detroit, MI	Pretty soon babies will have intercranial microchips implanted at birth and humans will be like cars equipped with OnStar....that is, remotely controlled and monitored. They will be able to adjust you on the fly in realtime. For example, if they don't like you they'll just "cut the ignition". I think they may be doing this already in China.

02-11-2010, 06:08 PM	#22 (permalink)
Canine Upright Location: Fort Bragg, NC / Kandahar Province, Afghanistan	I can't really imagine any human rights that could be potentially violated through DNA collection. Maybe as a basis for a eugenics program but that sort of thing being made into law in the civilized world is remote to say the least. __________________ Awesome sig coming to a post near you! If you say plz because its shorter than please, then I'll say no because its shorter than yes.

02-12-2010, 05:35 PM	#26 (permalink)
Canine Upright Location: Fort Bragg, NC / Kandahar Province, Afghanistan	what about things like your social security number, date of birth, mothers maiden name? Things like that are all in the federal government's possession, and with the right documents you could completely and thoroughly destroy a person's life. Genetic blackmail in the future would be nothing compared to what a person with the right paperwork today could do. __________________ Awesome sig coming to a post near you! If you say plz because its shorter than please, then I'll say no because its shorter than yes.