Legal

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.

Tags: edited by Port1080, written by pO157, DNA, government, privacy (all tags)

This story: 22 comments (2 from subqueue)
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1

And you all laughed at me.....

pO157.

Mon Feb 08, 2010 at 03:19:07 PM EST

5.00 (dystopian)

Once a dataset is made, no matter how innocuous the reason, it will be exploited by somebody for another purpose. Once a government agency is made, it won't be repealed, but instead will repeatedly do all it can to expand its scope, powers, budget and headcount.

That said, I've disagreed with these mandatory state run genetic test screens for a very long time. Sure, you're checking for the gene for Tay-Sachs or whatever now, but what happens later? What happens when this sets a precedent for conducting medical testing on people without consent, because the state says its cool? What happens when the majority of mothers in the hospital don't even know that these tests are being done? What happens when the lists of diseases gets so exhaustive that a positive in a government file puts a black mark on many people for life? Finally, what happens to the samples?

We know that once government gets its hands on something it seldom lets go without a fight. We see this in many states (like NY) that either demand the DNA be kept on file for decades, or forever. With no oversight on how that data is handled, who gets to use it, and what research companies can get access.

This has been occurring for years now. How long until some enterprising cop decides to look into cold cases by screening all the DNA in the database against the samples found in the area of the crime? How long until these DNA dragnets start ensnaring innocent people who happen to simply be in the area (absurdly tiny bits of DNA can be detected in forensics now --- if the coffee shop I just visited gets robbed in a few hours and they swab the counter it's likely sweat and skin from my hands will be picked up) at the time? Even worse, let's say you get pinched for a murder/robbery years ago --- how do you refute such evidence without alibi witnesses? Who is going to remember where they were on June 17, 2003? Who is going to believe you in court that you are innocent when the prosecution has 'DNA!' and half the jury has seen CSI or whatever crime show that is with the sailors and the ugly goth chick? Who is going to look through the records to make sure the random lab tech who was rushing to get out of work that friday didn't swap your sample with crazy Harry (the chronic arsonist and bedwetter) next door?

But... but... I'm not going to get sent to prison for life, you say. Fine. Cool. Whatever. Remember how we're always on here talking about 'health care' reform? Remember how insurance companies tend to screw people over with 'pre-existing conditions?' How much money do you think Blue Cross et al would pay for genetic testing of these databanks? How much do you think they'd pay for lobbyists to have the state 'screen' this entire databank as a "preventative measure" for every single test known to mankind? Of course, this data would then be reported to the insurance carrier, just like the poor baby in this story, and that kid is now branded for life.

The technology is coming. I won't turn this into a science seminar by explaining how this would all work, but believe me it's coming. The time to start protecting our privacy is now. We have to be proactive because once this cat is out of the bag, it's not going back in.

I've called for this before: We need a privacy amendment to the constitution. And the repeal of these retarded DNA banking programs as well.

Never compromise.

3

^ 1

Re: And you all laughed at me.....

Lou.

Mon Feb 08, 2010 at 05:53:17 PM EST

none

sweat and skin from my hands will be picked up

And why were you sweating, hmmm?

ugly goth chick

You take that back!  Abby is a cute as a button.

Why does reduced fat Swiss cheese have twice as many holes are regular Swiss cheese?

6

^ 1

Re: And you all laughed at me.....

Thalia.

Mon Feb 08, 2010 at 06:13:14 PM EST

none

I wanted my kid to be tested for various diseases.  There are quite a few that if caught early, are not a big problem, but otherwise can be deadly.  A friend's son has the inability to process protein for example that would lead to brain damage and death.  Now, he just has to take a pill and eat carefully.

The part that scares me is that this data is now available to researchers, and insurance companies.  In California at least, this data is kept indefinitely, and according to the article sometimes made available to researchers, and other third parties.  That shouldn't happen without express consent.  The GINA act should protect it from being used by insurance companies directly.  Then again, the law says you cannot perform medical testing or procedures without informed consent, so maybe this is a "special case."

2

Tangent

Steve Urkel.

Mon Feb 08, 2010 at 03:55:38 PM EST

none

Paternity testing at birth should be mandatory.

4

^ 2

Re: Tangent

MC Nally.

Mon Feb 08, 2010 at 06:01:16 PM EST

none

Paternity testing at birth should be mandatory.
Do you own stock in abortion clinics or something?

5

^ 4

Re: Tangent

Lou.

Mon Feb 08, 2010 at 06:09:20 PM EST

none

President AND Member

Why does reduced fat Swiss cheese have twice as many holes are regular Swiss cheese?

7

^ 2

Re: Tangent

pO157.

Mon Feb 08, 2010 at 09:04:04 PM EST

none

At the very least, mandatory paternity testing at the onset of any child custody/support case. With the caveat that any sample collected is not retained but rather used just for that one test.

Never compromise.

11

^ 7

Re: Tangent

Steve Urkel.

Tue Feb 09, 2010 at 02:11:46 PM EST

none

It would be better to get everything out in the open from the beginning. Testing at birth would pre-empt many child support cases.

14

^ 11

Re: Tangent

joshv.

Thu Feb 11, 2010 at 10:16:35 AM EST

none

It would also cause the breakup of many marriages, resulting in a Dad who doesn't owe child support to the mother (not his kid), and a mother who most likely will have to rely on the state for support.

15

^ 14

Re: Tangent

zyxwvutsr.

Thu Feb 11, 2010 at 10:23:28 AM EST

none

Not the way the laws are written now: if you are married to a woman and she has a child, that child is your responsibility. That's pretty much the primary purpose of marriage.

16

^ 15

Re: Tangent

joshv.

Thu Feb 11, 2010 at 10:35:40 AM EST

none

If testing happens at birth, and the father contests paternity in the resulting divorce proceedings, in many states he won't have to pay child support.

17

^ 14

Re: Tangent

Steve Urkel.

Thu Feb 11, 2010 at 01:31:33 PM EST

none

Yes, it would prevent dishonest women from perpetrating fraud.

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^ 17

Re: balls!

zyxwvutsr.

Thu Feb 11, 2010 at 04:56:45 PM EST

none

It could also lead, over many generation, to smaller testicles.

19

^ 18

Re: balls!

Steve Urkel.

Thu Feb 11, 2010 at 05:24:45 PM EST

none

I've heard that claimed before. How well supported is it? See also this.

 

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^ 19

Re: balls!

zyxwvutsr.

Thu Feb 11, 2010 at 05:31:35 PM EST

none

It's been studied in gorillas and chimps. Someone actually studied the correlation of semen viscosity and polyandry in primates.

I was king of disappointed that the paper you liked to wasn't written by Rod Johnson, PhD.

21

^ 20

Re: balls!

Steve Urkel.

Thu Feb 11, 2010 at 05:56:04 PM EST

none

That sort of thing is amusing. In the sciences my favorite is, unsurprisingly, this fellow.

22

^ 14

Re: Tangent

pO157.

Fri Feb 12, 2010 at 10:15:11 AM EST

none

It would also cause the breakup of many marriages, resulting in a Dad who doesn't owe child support to the mother (not his kid),

So there is a "legitimate state purpose*" in preventing a man from knowing he was cheated on and he is raising some random dude's child?

a mother who most likely will have to rely on the state for support.

Who says we have to have welfare for physically able bodied people?

*I hate that term.

Never compromise.

8

Re: The Government Is Storing Your Child's DNA!

Lou.

Tue Feb 09, 2010 at 09:04:53 AM EST

none

Did we all laugh at you?

Why does reduced fat Swiss cheese have twice as many holes are regular Swiss cheese?

9

^ 8

Re: The Government Is Storing Your Child's DNA!

stevetherobot.

Tue Feb 09, 2010 at 09:21:51 AM EST

5.00 (open)

I did, but just because his fly was open.

10

^ 9

Re: The Government Is Storing Your Child's DNA!

Lou.

Tue Feb 09, 2010 at 09:33:03 AM EST

none

I wasn't gonna say, but yeah.

Why does reduced fat Swiss cheese have twice as many holes are regular Swiss cheese?

12

Seeing a connection here

Lou.

Tue Feb 09, 2010 at 03:32:57 PM EST

none

Say your no-account cousin breaks into a house and leaves a drop of blood from a cut.  The cops run a DNA test - natch.  But they have no matches  Now say the coppers have YOUR DNA on file.  They just might come looking for you.

Why does reduced fat Swiss cheese have twice as many holes are regular Swiss cheese?

13

^ 12

Re: Seeing a connection here

pO157.

Tue Feb 09, 2010 at 04:11:53 PM EST

none

I came here to post the exact same thing. The science behind this has been out for a while, but the article popped on the wire today.

So instead I'll post a heartwarming story of some drunk psychopath stabbing a dog with a fork, then threatening to kill it with a circular saw which was brandishing. WTF is wrong with people?

Never compromise.

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